#I'm very fortunate to be able to have access to these kinds of resources

[piratefalls]

I think at this point I've resigned myself to not getting a full night's rest for a hot minute. nothing quite like having to spend a day asking colleagues for attorney recommendations "for a friend" when universally "for a friend" always means "me" (even though it's not, but I did need attorney recs).

[sleepyghost-x]

deer things for deer people!!

some things I do that help me feel myself :)

☆PLAY☆

Exercise is a must for me personally! Of course quadrobic are very popular but as a deerkin I heavily enjoy running [we can follow each other on Strava <3] Long walks and hikes in wooded areas are also very nice! Deer in my area live in riparian zones, and I will often take long slow walks by the water at dawn to try and catch a glimpse of them in the mornings. Make sure when doing any of these activities though to have enough water and food at the right times, and bring a friend if you struggle with exercise or mobility. A buddy can not only provide emotional support, but also safety or help in the case of an emergency. Please look out for yourselves !

Participating in martial arts or contact sports can also be helpful for younger bucks looking for a healthy way to get out that August-February aggression. Boxing gyms will usually offer a mix of weight training and sparring, both a great way to channel energy in a healthy way :)

☆SNACK☆

Adding some of the same foods to your diet that deer eat can be both validating and very good for you! As a generalization, most deer will eat a variety of shrub plants, fruits, and nuts or "true nuts." I am in the process of creating a recipe book, but here's a cheat sheet for now.

please note: Some of the foods deer eat are toxic to humans bodies! The most common are Beggars lice [and some other forbs] , Pokeweed, and Blackgum. Of course many deer also consume Fungi, which should always be verified before consumption. When eating anything always double check that you can confidently identify WHAT it is and WHERE it came from.

Not everyone's going to enjoy the salads that come at restaurants. That's okay!! One of my biggest turning points was finding out which plants/veggies I personally enjoyed and learning to make my own salads. This is dependent on personal taste, so its more a process of trial and error but don't be afraid to enjoy the things people tell you not to! Same goes for fruits and nuts. Making your own dried fruit or trail mix is also super fun and yummy when you cater it to your own tastes. You can also bring those last two on your hikes!

If you don't have access to these foods that's okay!! Even eating what you can outside can make one feel more in tune with themselves :)

If you don't have food stability period, please look into any government programs available to you. feeding your body is so so important. I've linked two from my area below that I know to be very helpful from friends testimony, but there are many others.

for one:

for those caring for fawns:

☆WATCH☆

As crepuscular creatures It's often very healing to be awake and outside for dusk and dawn. For years now I've enjoyed watching the sunrise, but the sunset is also very kind to our hearts. It's up to you. I'm fortunate enough to work the night shift and be up very early for practice so very often I get to see both.

If you have the tools to do so, I'd also recommend very early morning hikes as mentioned earlier. I like to start when it's still dark out, and time it so I reach a resting point as the sun comes up to watch. Night hikes are very enjoyable as well but make sure you bring everything you need, including one or more trusted companions able to help you if needed.

Getting in touch with your local species can make one feel more connected too. Go deer watching if you can! [no, looking in the mirror does not count] Take pictures, draw them, write about what you saw, or just sit back and enjoy the others.

☆DRESS☆

This ones pretty self explanatory. I wear mostly browns, black, and cream, sometimes graphic shirts with the woods or deer on them. I prefer very baggy and sturdy clothing for mobility and coverage when going out in the woods, but that's your choice. For those like me though, I'd recommend work wear. Much of it is in browns and its generally very durable. I get mine second hand, but if you're going somewhere really wooded and thick you might wanna get it newer and less worn in. Also! for those who like to hang out in the riperian zones [I'm looking at you mule deer] some hunting stores will sell water resistant pants and shoes!!

I prefer hard, chunky shoes reminiscent of hooves, usually my Cody James, but again wear what's most comfortable for you, and appropriate for your setting :) [closed toed for hiking, lightweight for swimming, etc...] For my fishhead people, you can also put a line down the front to make them more hoof like as pictured below. I do this to all my converse :P

Something silly but fun to try if you wear makeup and have a lighter skin tone is henna freckles, if you're darker white or cream freckles look really nice too :)

I have no wardrobe solution for the absence of antlers, but I have a shed antler from a white tail with a hole drilled in the base that I sometimes wear tied to a belt loop... sorry bucks.

TL;DR

go outside, eat your veggies, be deer, be safe, have fun <3

*While I personally do these things, they wont apply to everyone. Feel free to add to this or make my suggestions your own*

[catsharky]

I totally agree that Wheatley wasn't himself after he got plugged in! I think is reinforced by how GLaDOS was nicer when she was unplugged even before the Caroline revelations. Part of that might be that being a potato battery is pretty humbling but I like to think it's the facility messing with her and Wheatley!

Yeah! I think it's pretty much canon that being plugged into the facility does have at least some kind of mind-altering effects as a result of the scientists trying to control GLaDOS (I can't say that's a fact only because I haven't played it through in full recently enough to state it as fact)

I go into my thoughts on the whole thing a bit more under a read-more because it got kind of long:

With GLaDOS not being true AI but a digitized human mind, controlling her would have been more than just a coding problem. It was a question of how they could force control onto a person who was intended to hold power over you. Fortunately (or rather unfortunately) for Aperture scientists, morality wasn't an issue. They would have been free to use whatever methods were necessary until they found a combination that finally broke Caroline, stripped the person she had once been out, and turned her into what we see in the games.

Whatever 'conditioning' they used, it would have had to be extremely complex to keep GLaDOS from circumventing it, and in the time period the story takes place in (and even by today's standards, honestly) that would have been extremely resource intensive. Think rooms full of servers. Additionally, based on how the core transfer works in Portal 2, the part that makes up GLaDOS herself seems to be entirely contained within her 'head'. So you have miles of circuitry and computing power that's not actually needed to run the 'AI', while also needing a lot of resources to actually keep the AI in check, and it needs to be in a way that she can't sabotage to take full control. How do you do that? You hard code it into the system itself so it can't just be ripped out at the root... and then add a little Skinner box conditioning for good measure.

To further support the idea, GLaDOS shows that she's fully aware of at least some of the controls that were placed on her. Things like the testing euphoria and electric shock that's dispensed to keep her from sabotaging the tests. I find it very hard to believe that GLaDOS would be aware of those things and not be able to find a way to circumvent or disable them if she could, which implies that she flat out can't. Now look me in the eyes and tell me something could have full access to manipulate GLaDOS without her being able to reverse engineer and destroy it in the amount of time she's had to devote to it. Exactly, you can't, which means there's a different reason why she can't shut those things off, potentially because they're linked to necessary functions.

Would it not make sense if the thing keeping her from say, releasing all the test subjects were fundamentally tied to her control over the areas the test subjects are kept in? Then, if she were to break past those safeguards and gain the freedom to set them free, it would come at the expense of actually being able to do so.

So with all that in mind, Wheatley's sudden change of heart makes total sense. Experiencing awe and wonder isn't a problem because it doesn't prevent or go against what the scientists wanted. But like I said, allowing a test subject to leave? That absolutely would have been something the scientists would have had to stop a caring human mind (Caroline) from trying to do. The minute that became the topic at hand, the system pounced, the controls kicked in and 'I Am Not a Moron' became my favourite song on the soundtrack.

-

(On a related note, I also do believe that Wheatley is likely another human mind- which is pretty widely accepted by the fandom, so I'm not breaking any new ground here- but I specifically think he's not a whole human mind. It would make sense to me if he was a follow up to GLaDOS- the scientists looking into whether only using part of a mind would give them an 'AI' that would serve their purpose and not ask questions, only to find that the end result wasn't viable. After that failure they tried repurposing him as the intelligence dampening sphere like GLaDOS mentions, before shuffling him off to a job in title only. The Extended Relaxation Center is shown to be fully automated, and wouldn't have required any actual outside oversight, so Wheatley was almost definitely just running around doing busy work for a few decades until the events of Portal 2.)

[soulrph]

Hi Blue! I was wondering, do you by chance have any thoughts on meme accessibility? More specifically, I'm talking about the format of memes being accessible to people who possibly struggle to read certain formatting or that kind of thing. For example, I find that your meme lists are VERY accessible, but I find so many of these meme/resource/rph blogs are not (they use multiple spaces between words that make it harder to read, use too many fancy fonts that are difficult to read and don't show up on screenreaders, etc). What are your thoughts/feeling on memes being inaccessible in this way, and how have you had to adjust your meme formatting to ensure you've got accessibility for your own memes (whether here or on soulprompts)?

i have some thoughts, my light! although, fair warning, my thoughts are actually fairly ?? like, middle-of-the-field, i think? so i'll list a few of them here, and you'll understand what i mean by that in a moment!

accessibility is, in my opinion, a unique thing to each person. so, a while ago i tried to use the blue font on my posts for this blog, bc my name is blue, the colour theme for this blog is blue, it just felt like a very cute idea, and at the time i was using the dark tumblr background, so it stood out very clearly! all was well! all was happy! but then i got a new laptop two days later, and the default is the blue and white background for tumblr, right? so i was looking at the posts and it dawned on me that the light blue font is actually pretty difficult to see on the default screen, and i made a post asking if people would be happier for me to just not use the light blue font anymore, and one person said yes, so i just keep using black font now! mainly because the light blue is more of a pretty aesthetic thing; the black on white contrast is clearer for everyone, and if people need to lower the contrast, their personal computer settings would more than likely accommodate that!

however, the reason i think accessibility is more of a personally unique and tailored thing is because of a recent debate surrounding spacing in a formatted post. now, me, personally? i can read and follow just about any format there is. purple prose is an exception to the rule, and only because i feel like i have to sit down and translate it WHILE forming a reply to the thread, you know? but single spacing, double spacing, triple, etc? it doesn't bother me. i'm very fortunate that way, but i digress!

i have some friends who need single spacing in their responses, and i have others who require the additional spaces to separate the words more distinctly. something that's been more present on rules pages lately is that many people are happy to accommodate the personal preferences and needs of their writing partners; likewise, many people are very aware that we're all only human, we will forget things, we will make mistakes in our formatting, and steps are generally being taken to ensure that we, as a community, are hospitable enough to allow people to speak up and say "actually i can't read the double spacing very well" or "would you mind making the font just regular from now on?" and we'll be able to communicate these things more clearly and comfortably!

i feel like i'm rambling and not answering the question, so i'm gonna make the rest of my points shorter and more concise!

many of the meme blogs which i frequently rely on are run by compassionate and lovely people who happily change their formatting to suit their followers. this is a stark change from 5+ years ago, when these requests could have been responded to with indignant tones of "well why don't you use a different blog?" or "it's not MY responsibility to make YOUR experience a good one". i have a frighteningly but wonderfully large number of followers on this blog, and i actually consider it a privilege when people make these requests, because it tells me that i'm doing something right that people are comfortable enough to ask me these things!

as for how i format things on my blogs, i admit that i do use the fancy fonts for the titles of the memes (although i'm very VERY happy to change that to a regular font if it's something ye want!) and as far as spacing is concerned, i like to leave a few spaces for the action prompts, but it's always single spacing after that! so like:

[ ANSWER ]: receiver answers the lovely sender's question.

and that's only because i think it's a little easier to read, but again, i'm happy to change that if people want me to!

i hope this answered your question my angel! thank you for asking! if you want more input on this, @leneemusing has several very informative and insightful posts made on the subject of accessibility in the rpc!

[algolstare]

When you're able I don't know if you can advise. I have recently ended up in a DV shelter and am having to go jobhunting etc no time to process the horrors. I have very limited funds and same for help with food, it's very limited. I'm just asking if you can share what you eat and any tips for food as a kind of model to follow. This is the first time I've ever had to live like this tbh. My family won't help me and say I basically deserve the fallout after the breakdown of my relationship because they told me so. Yeah they're right I see that now but 😭

First & foremost I am so so so so so proud of you lovely, you did amazing to survive & get into a shelter.

You deserve the world, your family are wrong, & I'm so sorry you can't rely on them.. I know how painful it can be to move thru the world without a family to depend on, in the way so many take for granted, in the way people assume we all have. I promise you it is possible, & you will find your people along the way

Honestly I'm not sure if I'm the best model when it comes to food, & what is best depends on what you have access to - do they have a stove or microwave for you to use? A fridge? It can be really difficult to follow the best guidelines for nutrition when you're limited, I've mostly been focusing on breads & pastas & carbs carbs carbs because when I eat them I feel more capable of doing it all (& I find it difficult to figure out what to shop for anyhow as I never had autonomy with what I could eat.)

Pick things you can reliably have the implements to cook, things which are shelf-stable, things which are filling & things you feel better after eating, is my best advice. For me that is ramen, pancake mix, kraft mac n cheese, bread.. not the most balanced focus at all but I do eat other things too, these are just the core of it.

Having orange juice whenever I want has been my great pleasure since getting on foodstamps, I remember I was so glad to have gotten it the last time I was at the ER from the harm done to me, now I can celebrate it safely freely & savor it.. also prevents scurvy

But more than food shopping with what you have, look into what food banks & other such resources are in the area - if you're in the US you can look up 211 (you don't have to call if you don't want) & they have tons & tons of info. It's easier to get help with food than with housing, unfortunately & fortunately

Then, again it's US specific advice, but being homeless w/ no income can make you qualified for expedited services w/ foodstamps!! & also for me it waived their requirements to work a certain # of hours per week, being homeless. If you have access to a computer (or I think even a phone is fine?) you can apply online, if you have no computer public libraries often have them, if you have neither there should be a public office of some sort with paper applications but what it'd be called depends on where you are.

Also I recommend looking for specific things at a time so you don't get overwhelmed trying to decide what is best all at once, when searching for aid. Especially with big collections of orgs like 211 & others, it can be just way too much & too many decisions to make in one go. Take it one step at a time.

So to say it in a list as I know I veered off track a bit:

1. With what funds you have to put towards food, focus on foods that are filling, that you can cook & store reliably.

2. Don't get scurvy but don't feel bad either, all foods are good foods & completely value-neutral. Lots of the foods that get maligned by our fatphobic culture are super dense & filling & glorious for when you have limited access. (O potatoes, bread & pasta, how I love you!)

3. Look into food banks & similar orgs if you haven't already, utilize 211 or a similar collection

4. Apply for foodstamps if you haven't already & if you're in the US

5. I'd highly recommend making a mind map on paper or otherwise of your current resources, current needs, & anything you know you need to do but don't have the resources to get done. (Not having the mental resources to expend across the board to all things is *normal* it isn't your fault. Being homeless is exhausting, a constant crisis lessens how much you can do.) Having things out externally in a way you don't have to just try to remember can really help to keep on top of things, it has for me at least. Mine looks a bit like various connected boxes - like "Housing", "Income", "Transportation" & "Baby", with the various potential paths I'm figuring for fulfilling each underneath, & some smaller ones that got thrown by the wayside for a bit like "Health insurance"...

Please know that you are so worthy of better. Even when you struggle, even when others don't acknowledge this, you are worthy of good. It's hard because it's hard, you are doing your best, the coldness of the world is not a reflection of you. Each life has dignity, including yours & mine, no matter what!! I am rooting for you!! Take it one step at a time lovie dove, I am so proud of you. Please come back & let me know how you are doing whenever you wish to, I am wishing for your happiness always.

[af1899]

THE REAL BEST NEWS OF THE UPDATE

The whole banner is boring, these are the real best news tonight.

POGGGGGGGGGGGGGG

Yes, after a long wait of over 4 years, Sophia is finally getting her first alt and as a free unit, which is very nice.

Part of the artwork, as well as the event information, should be out in less than 2 hours since this post's date/time.

Anyway, I'll now comment on a few things about the new units now formally revealed with skills and artwork.

Trailer

Thoughts

The seasonal units come to no surprise as they were all previously leaked (thanks again Intern-kun!) but there are some interesting things in this reveal and the associated notice.

First of all, you're perhaps wondering how well I did with my guesses on the attires Male Grima and Kurtnaga would be doning plus the free unit potentially being Nasir, well... completely wrong with the last two, Kurthnaga isn't dressing like a Jiangshi, actually looking more like an... emperor? But if you know his role in the Tellius games, then it makes sense, either way he looks nice, I was right with Male Grima, more dressed up than his Female counterpart and the like, but Okuma Yugo takes on drawing Male Grima again and he looks so cool.

However, I'm still shook one of my biggest favs in Elibe got an alt like, out of nowhere, I was totally expecting some Tellius unit that'd go along with the theory I had in mind, nevethless, I'm excited to build her and comment on her gameplay elements (that'll be done once I have her properly built, but I need to prepare some resources in advance), I'll also talk about the event stuff later on, I hope today but something came up recently, so we'll see.

The banner itself remains the same: an easy skip with nothing I do feel like I need right away.

Male Grima is fodder galore for me, fortunately, he's easy to fodder for two full passive skills if one of them is [Sturdy Stance 3]. He's quite fearsome to face if you initiate on an ally of his near him, and he'll be pretty durable, replacing his special with [Moonbow] is also a good call, then add a movement assist, a [Atk/Def Bond] as [Sacred Seal] and he's set. It's also worth noting he's a colorless breath armor unit, giving him less likelihood to get WTD.

Rhea... Idk if that weapon type and animation would give away some important spoilers, but even though I know something regarding her identity, I'd rather continue avoiding spoilers, I have no way to play her home game. She's also another fodder galore unit in my eyes; but onto what's she like as a unit, not as great as Male Grima, and she relies on both keeping herself healthy to reduce incoming damage and deny follow-ups, plus healthy foes to deal follow-up attacks, not the most reliable thing but not too shabby either, keeping her health on check shouldn't be as difficult.

Kurthnaga has a rather interesting weapon over there, it makes its user beefier in enemy phase and you can inherit it to any dragon unit of your liking, the rest isn't exactly too interesting except for maybe [Even Pulse Tie 3] being on a seasonal semi-demote, it's a decent skill that can (in part) counter some teams or units but most of the time, you'll find it useless. He's also added like Spring Narcian, introducing a new {Experience} skill and an inheritable weapon, plus on demote too. 🤨

Lastly, Sothis is with Male Byleth, it seems to be the better fit for her out of the two despite his not-so-recent Legendary alt, since his Female counterpart leads a Duo with Rhea. Fodder galore as well but this one has some things to point out:

Welp, that's Múspell's C-skill but without {Joint}-esque effect all right, and you can give it to dragons, it'll likely stack with Múspell's C-skill, resulting in a slightly bigger boost in damage dealt and reduction on damage taken, most likely at least.

As a unit, this Duo is also best used on enemy phase, with a Lv.3 {Stance} of any kind being their best A-skill, they should be able to handle themselves just fine, but they're still vulnerable to arrows, green bow users like Rath or Python (for accessable choices) or Shamir with [Deadeye] should be able to quickly dispatch the Duo, they'll also most likely be used in offense than defense I think, they still don't seem super threatening, but their selling point would be the Duo Skill, which can help some units deal with Fallen Edelgard and some other dangers that tend to deny follow-up attacks:

...And it can be re-used on the same map.

Anyway, it seems everyone here has some sort of focus on being tankier and enemy phase oriented, yet there's a clear ounce of difference in how to use them, but nothing I'd exactly find super broken or must-have, the Duo might come in handy though.

I'll just free pick blue if available, otherwise I guess I'll go for colorless, green or red, I'm moreso looking forward to Sophia... speaking of her, it's possible she'll also play similarly to the units in here and her OG form (being slow and tanky, best used on enemy phase), if that's how she plays out, then [Close Counter], [Atk/Res Rein 3] (though I need a Brady first to properly fodder Plumeria) and [Pact Blooms+] are ready for her, but I'm short on B-skills and other expensive stuff, maybe [Flier Formation 3] since I have one last Díthorba to spare, I could pick [Quick Riposte 3] but my OCD wouldn't let me live with her just inheriting it up to Lv.2, and my only source without promoting anyone is Nah, so I'd have to do with alternatives, we'll see...

Anyway, thanks for reading and I hope you get who you want soon in the banner, hopefully Sophia will do great for you if you plan to build her also.

[radicalposture]

Hey, so were you diagnosed with autism/adhd as an adult? If you don't mind me asking, was that difficult to achieve? I'm 25, and I've often thought I might have adhd, but I've held off on looking into it because I hear it's extremely difficult and expensive to get it tested and diagnosed as an adult.

yes I only got diagnosed last october, I was 25 then too! it was kind of a weird journey for me, all of my siblings and my dad got diagnosed with autism or adhd one after the other and I was still saying “but I can’t really be autistic/adhd” right up until I actually got diagnosed lol. but since then my whole life suddenly makes sense for the first time and I really think things are gonna be ok! this applies to autism/adhd/other neurodiverse stuff but autism and adhd is what I know, but I hope it applies broadly as well

so unfortunately yes, it can be pretty expensive to get through the whole process. depends on where you live of course, I live in Ireland so even though we do have public healthcare I would probably have been on a waiting list for upwards of two years to see a terrible psychologist who didn’t know anything about adhd/autism so I went to a private psychologist. I already knew her pretty well bc my siblings had been to her and I knew she knew what she was talking about and I felt comfortable with her. seeing her cost me around €900 which is definitely a lot, different psychologists have different rates but the price can go up depending on what tests u get done. the more tests you do the more expensive it will be as a general rule (at the same time I saw a different psychologist who had a lower flat rate so idk what the “rules” are about this tbh) I got a standard assessment as well as autism and adhd tests which is why it was so expensive. it used up pretty much all my savings lmao but after getting a diagnosis I was able to apply for disability allowance (which was a hellish process) and I got rejected and had to appeal the decision but I got it in the end, which is fortunate bc I quit my job lol.

recently I wanted to look into medication so I had to go to a psychiatrist because you can’t get a prescription for stimulant medication from a gp in most countries I think? BUT he’d only see me if I got rediagnosed by his psychologist, so that was another €300 for each of them. I did get prescribed ritalin in the end but I’ll have to get the prescription refilled a few times a year bc it’s a restricted medication, which will mean paying €100 ish for each time I do. fortunately I don’t actually have to pay for the medication itself bc I have a medical card.

so yes, it can be expensive! all told it’s cost me almost €2000 to get it all sorted and will keep costing me maybe €300 a year from now on, so it’s definitely something you have to budget for. especially depending on where you live, I imagine things are v different from country to country. also I’m very fortunate bc I still live with my family so I’m free of some financial pressure and I’d been saving for it for a while but I know how hard it is to countenance paying out that kind of money, and wondering whether it’s worth it.

as to whether it’s difficult to achieve I think you’ve got to break it down because official diagnosis is only part of it. so if you think you do have ADHD I’d look at it from a couple of different angles:

1. self acceptance/understanding is absolutely the most important thing. I know people who’ve never been to a psych who know they’re autistic/adhd and really flourish, I also know people who have official diagnoses but who won’t accept it themselves and reject help/support and they’re making things so hard for themselves. so the most important thing is to educate yourself about what adhd means and, more importantly, what it means for you. everyone’s brain is different and understanding exactly how your brain works and why you think/behave the way you do is the most important thing you can do. there are a lot of resources out there, especially online, - I’ll put a link to a google drive of books and things I have at the bottom - and it can be good to connect with others online as well. having people who Get It and can help you is really paramount, I know often our irl families/friends can sometimes let us down so sometimes the only support you can get is from following ppl on twitter or something. the adhd subreddit is weirdly helpful and supportive, it’s great to be able to throw out a question like “I think like this am I insane y/n” and have other people go “nah ur fine” it’s very validating (also validation/external perspectives is super important for adhd bc we can be extremely bad at self assessment). so yes, the most important thing is firstly to know thyself by 1) educating yourself and 2) listening/connecting with others like u.

2. is it important to have an “official” diagnosis? no and yes. obviously you don’t need a diagnosis from a doctor to know what you are, and 70% of the things needed to help you flourish are going to come from your own research and the support systems you make. and if you cant afford or access a psychologist or psychiatrist it doesn’t make it any less real or bar you from educating yourself/accessing resources etc. HOWEVER. if you can get a good diagnosis then I really would go for it, bc: 1) it opens a LOT of doors to official resources, whether that’s access to welfare, supports and accommodations at school or college, medication, etc etc. a lot of the time the supports we need are behind this diagnostic paywall, which sucks but it is what it is :/ so that’s one consideration. 2) it can be really validating and help set your mind at ease about whether you “really” have adhd or if you’re “faking”. like I said I didn’t believe that I was “allowed” to be autistic before I got diagnosed. I also didn’t consider that I might have adhd, I went in thinking I’d just get the autism diagnosis so it wasn’t something I would have found out on my own probably. so it can be good to get an outside opinion, especially as, like I said, we can be really bad at self assessment. 3) it feels good to know you have a piece of paper to throw at rude family members/teachers/doctors who don’t believe it’s real 4) if you can find a good psychiatrist/psychologist it can be such a good thing to have that support and to get genuinely good advice from a professional you trust. doesn’t always happen but if u can find one it’s a godsend

wow this got long. to summarise, if you think you have adhd or anything else I would

research and educate yourself. for adhd probably the best thing to do is read driven to distraction and delivered from distraction, written by two psychiatrists who are adhd themselves. they’re both in this google drive along with loads of other resources I’ve collected, there’s also books about autism as well. as a disclaimer not everything/everyone here has my 100% endorsement some of it is there for academic/historical interest or only parts are helpful but by and large it’s useful. also watch this video and feel Seen

look for a good psychologist/psychiatrist if you’re going for a diagnosis. see if there’s an adhd organisation in your country/area and if they can recommend anyone. a lot of the time you’re better going to a child/educational psychologist who’ll see adult clients as they tend to Get It more. do look for someone who is clear about having experience in adult adhd bc unfortunately even qualified psychologists get a LOT wrong so make sure you get someone who knows what they’re doing before you give them your money

yes it can be really expensive. but if you’re needing to access things like medication or welfare I think it’s well worth the trouble and the money. my sister got diagnosed in her second year of college and was able to save her degree bc of extensions on projects and things like that (I didn’t get diagnosed until after college and spent four years torturing myself I WISH I had known) and it can be something that’s better done sooner rather than later. So if it’s something you can do without putting yourself in financial danger I think it’s good to bite the bullet and go for it. like I used up basically all my savings BUT I now can access disability payments and medication so it was worth it for me. it’ll be different for everyone so use your judgement obviously

anyway hope this helped! let me know if you need anything else! and good luck on your journey

[babbushka]

man babs, binge reading your fics has gotten me back into writing adam driver characters in a MAJOR way and now I have like 8 wips open (mostly for my emo space wife, kylo). i'm super curious because of your kylo titanic au that Owns My Ass and lives rent free in my head, how do you go about researching the details you include in your gorgeous period fics? is this pre-existing knowledge? do you have a database? are you just the patron saint of boolean searches? (thanks for your time! :) )

Oh I can’t tell you how happy I am to hear this!! Any time someone starts writing again or finds the passion for storytelling, the world becomes a better place, thank you for sharing your talents with all of us :) 

I absolutely love this question and could talk about planning historically set fics and scripts forever but the short answer is it’s a mix of extremely extensive research and pre-existing knowledge! 

Usually my historical writings are born from a pre-existing special interest of mine; I tend to write things in settings that I’m already passionate about and have too much information in my head that needs to get out somewhere. Growing up my parents (and especially my grandma) were extremely supportive and would sneak me into the university library so I was very fortunate to grow up surrounded by a ton of reference material for like, every possible historical setting that a kid could want -- medieval royalty and knights in shining armor, cowboys in the old west, ancient rome and greece and egypt, piracy of the late 17th century on the open oceans, the romance of the georgian, victorian and edwardian periods, you name it lol 

So for those types of AUs, I have a lot of knowledge already in my head, and that tends to be the foundation for why I want to write something. With the Titanic AU, it was a mix of my absolute obsession with Edwardian clothing and the mystery and tragedy of the sinking of the ship. 

However I do do a lot of research, very extensive research in all honesty, because I personally think that with all the resources we have, there’s no excuse to half-ass something when I can just look it up, you know? Why guess what type of closures their shoes had when I can look it up and know in 2 seconds that the answer is buttons? Stuff like that may seem inconsequential, but it’s really important to me for the world-building of a story, whether that’s for fic or my professional writing. 

As far as where I find these sources, I tend to look through museum archives for extant examples of clothing from the era, primary source material of the time like newspapers, advertisements, journal/diary entries, peer reviewed essays and academic papers from universities, and vetted documentaries! There’s no one database or source, but that’s kind of the fun for me. 

I love to research, lol both of my university degrees have a focus in the history and theory of my field, so the process of digging through sources and trying to find information is one of the most enjoyable parts when it comes to writing historically set pieces! 

I’m sorry i don’t have a neater answer for you, but definitely hit up museum digital archives and try to access a university library’s server if you can! There’s so much out there that we’re so fortunate to be able to read through, the age of information truly is now lol :)

[la-bruja-de-la-literatura]

Confessions of a Budget Witch

Originally posted by me, in the "Witches & Pagans" Amino.

Let's get this out of the way right now: Being a witch on a tight budget sucks.

Being on a tight budget in general sucks, but this entry is focusing on witches on budgets, and the shadowy, consumerist side of witchcraft and paganism circles. So hold on to your brooms, brujxs, this is going to be a log post.

The Aesthetic/ Instagram Witch

Before anybody throws stones, I have an Instagram account (with this same name). I'm not against the witch aesthetic.

In fact, I think it's great that so many people are passionate enough about art to create these wonderful images. I adore those photos with rose quartz crystal balls and points next to delicate himalayan salt lamps and towering pastel pink candles, and the magnificent bundles of dried roses and lavendar.

Would I want all of those? Goddess, no. Cleaning up all the pouring wax alone would drive me insane, and thinking of all the vacuuming involved with all the dried herbs littering the floor makes me want to take a nap.

And yet, when I close my eyes, I think of some of those images of tall candles littering an altar, of a big crystal ball and tall crystal points. I think of creating big, elaborate crystal grids. I think of a nice stone mortal and pestle I've been wanting to buy for years.

Reality, however, has to hit sometime, and for me it's always when I check my bank account and remember that I barely pay rent with my current salary on most months. I constantly need help with groceries, medical and cellphone expenses. It's gotten better, but I still am not completely financially independent.

That said, I'm fortunate enough to still have some money to buy the things I enjoy, mostly crystals, candles and readings these days. I desperately want to support other witches/spiritual healers, so I carefully look over my finances and put aside some cash for them.

Does this mean I am any less frustrated? No.

In fact, a lot of my anger bubbles up when I read a new spell or witch book with a list of ingredients, always with the note saying like "you can always substitute ingredients, but it won't have the same effect". Which begs the question of why I bother looking up spells in the first place when I usually only have kitchen herbs and my 10-15 crystals (which is quite a lot of pretty rocks as it is). I feel like all these resources ask for the few things I do not have.

Now, I won't say that all sources are like this.

Websites and YouTube channels on minimalistic witchcraft are mostly free, and books like "Light Magic for Dark Times" by Lisa Marie Basille and "Holistic Energy Magic" by Tess Whitehurst, for example, have little to no need to buy a list if ingredients. However, these tend to be the minority in the witchcraft community.

Is that the budget witches fault? Absolutely not. We all have bills to pay and real-world responsibilities. The fact that we still fit this stuff into our lives just shows how much the Craft means to us. Which beings me to my next point...

Finding Affordable and Functional Tools

Western Witchcraft tends to rely heavily on materials and tools to gain results. While many witches guarentee that you "only need yourself" to do magick, the reality is that magick without tools is incredibly difficult and almost impossible for baby witches.

The good news is that stores (in the US, at least) like Five Below and Dollar General are selling some basic stuff like candles, essential oils, crystals and incense at low prices. That said, aside from the candles, glass jars, wooden boxes and incense holders, many of those tools are low-quality. Most of the essential oils I've found at these stores, for example, are perfumed and not real plant-based oils. Tarot decks from places like Wish are usually cheap bootleg imitations that are also low-quality (and also don't support the creators). Another disadvantage is that we aren't supporting the metaphysical community when you buy from these places, which is something I find frustrating. Lastly, I've also noticed that cheap crystals are not not mined ethically, and that is another thing that I personally try to avoid buying cheap if I can.

Now, some common stores, such as pharmacies and grocery stores, are still quite useful to the budget witch. Pharmacies tend to have plant-based and cruelty-free essential oils and diffusers for good prices. Just make sure to research what can harm pets if you have them. Tea tree oil is very toxic to dogs, for example, but lavendar is not. However, lavendar is harmful to cats. Make sure to know what you're using if your pets are around you. Grocery stores are also great places to get cheap dried herbs.

Law of Attraction and The Root Chakra

If you've been reading my post, you'll have noticed that I do not like the Law of Attraction. So we are all clear, I am not against having goals, or following your dreams or passions. I am against the way this system makes the practitioner feel responsible for factors out of their control. (There is a Tumblr post that also explains how the ideology of LOA falls withing the B.I.T.E. model, which is used to identify cult ideology. I'll link it here soon).

I have also become incredibly wary of using chakras, as the popularized system that most witches use today were made-up by a white author.

What bothers me more than any of the aforementioned things is when other practitioners state that those of us in a difficult financial situation are either not working with our root chakras (which focuses on finantial stability, and livliehood) or just aren't using the Law of Attraction well enough. Blaming these kinds of difficulties on budget witches is not only shameful, but it's also usually a marketing tactic used by certain folks to make those of us desperate for money to want to buy their services to "learn how to get rich" or at least financially stable enough to thrive.

If you are interested in using the Western chakras, there are cost-effective ways to work on them, such as using meditation. Again, YouTube is a rich resource for hundreds of free and effective guided meditations on anything from chakras to spirit guides.

Also, let's not forget our good old friend, Practicality. When you get an infection, for example, your priority should the doctor/medical professional first before witchcraft, unless you have a herbal specialist that can create a safe and effective holistic medication (and this person should be, again, a professional). In the same vein, if your are going through a financial rough spot, buying a bunch of root chakra candles or crystals in the hope that your situation will improve is contradictory to what you need to do: save that money. Maybe get one or two inespensive things if you can. If not, use the free resources on hand.

Don't Allow This to Discourage You

As much as many of us claim not to need tools (and I applaud you if you manage with so little, willingly or not), the truth is that most of us like to have things on hand, and I am no exception. Books, candles, crystals, decks and herbs are what I spend my money on. I am aware that there is a materialistic aspect to the way I choose to work. I even have a cauldron and a professionally made wand, despite not being Wiccan and using both for only special occasions. Heck, right now the cauldron is just housing a bled of herbs to cleanse anything I put in it.

That's my choice. I save for some months and then buy little by little. But there are other ways to be an effective budget witch and thrive.

For example, many witches on this site have pointed out that you can make your own tools, such as wands or altar decorations, out of sticks and rocks. Some folks prefer finding their own tools. Just be careful not to pick up anything poisonous, or disturb the nest of any animals that may be around. Also, do NOT eat anything off the ground unless you are 100% sure what it is and that it has been grown in clean soil. Go to the supermarket for edible herbs if you can't find a local market or herb shop. A quick online search will help with that, and you'll be acquainted with your environment.

Tea is also another wonderful resource for the budget witch. It is easy to find, usually under $5 a box (in the USA) and good for you. Again, it's still wise to be careful when trying new herbs, but I find most tea companies will stick to fruits amd common herbs like chamomile and peppermint, to name a few. Honey pairs well with tea, great for magick, and also very accessible. You can also open tea bags for a spell, or invest in loose herb mixes and a strainer. Try buying a teapot if possible. If not, boil your water in a pot over the stove, microwaved tea isn't as good. Trust me.

Tips & Tricks

🖤Crystals are just as effective if they are small or pocket-sized, and usually a lot cheaper that way. There is the bonus perk of being able to carry them with you on the go in your bag or pockets.

🖤Use non-magickal sources as well a magickal ones to identify herbs and crystals so you can be sure they won't harm you. Crystals can also be toxic.

🖤Some people (myself included) believe normal rocks to be just as powerful as crystals. You can even try painting them the color you want to manifest, or you can put sigils on them.

🖤There are free digital tarot apps that are great for readings and having a deck with you wherever you go. The Labyrinthos and Kawaii Tarot apps are the ones I currently use.

🖤Plastic flowers and fruit can be cost-effective decor for your altar, and maybe even an offering or representation of your deity(ies) if you have any.

🖤Epsom salts are relatively cheap, and adding your own essential oils to them in a tub or foot bath is a great spa day remedy and good for metaphysical and physical cleansing. Just make sure they are real essential oils, and look up the correct dosage.

🖤White vinegar is also affordable, and efficient glass, counter-top and carpet cleaner. It also has protective properties along with salt, and it's great for cleaning your altar, if you can stand the smell.

Some Resources:

My Go-To Etsy Stores for Ethical and Affordable Crystal Buying: (I am not a sponsor for these stores, nor am I being paid to advertise them).

The Spiritnectar

Moonrise Crystal

Ethically-Sourced & Affordable Crystals. My order came with a tea bag as well!

Crystal LionGems

Budget Witch Videos:

The Witch of Wonderlust on Low-Budget Witchcraft

Magickians Budget Witch Guide

Cheap Places to Get Books that Aren't Amazon:

Thriftbooks

BookOutlet

Or rent books at your local library! You can also make requests if they don't have what you're looking for.

That's all for now, brujxs. Please tell me your thoughts, and how you handle being a budget witch. Stay safe, witchy and freaky. 💜

[cinematicquack]

Film Project | Production Design Homework and Exercise 2

Unfortunatly, I have had not had time to complete exercise 2. I did do lots of planning on what my 5 images were going to be. Here is my slides. I realise in retrospect that my plan might not fit the brief exactly, but it was fun to conceptualise nontheless.

I'm dissappointed I didn't have time to take these pictures, but hopefully i can in the future!

SET DECOR ARTICLE

this week I read Hail, Caeser! by Karen Burg, an article about Nancy Haigh and Jess Gonchor's work on the Coen brothers' comic whodunit. https://www.setdecorators.org/?art=film_decor_features&SHOW=SetDecor_Film_HAIL_CAESAR

I actually studied and wrote about this film last year in the Contemporary Hollywood Cinema module. It still remains one of my go-to feel good films. It's bizarre and whimsical. I love it's detail of old Hollywood - and the costume and production design is what really sells it.

The article explains that both Haigh and Gonchor had worked several times with the Coen's before, and I think you can defietly tell. The coheasion between the design and cinematography/direction creates a seamless feel of old cinema - paralleling the protagonist's, Mannix's, seamless running of the studio and its stars.

"They eagerly dove into researching the various kinds of films being shot for the movie, as well as the behind-the-scenes look at filmmaking back in the 1930s and ‘40s. Fortunate that the studios had photographers on set who recorded the look of the movies, they had access to a rich lode of archival material and were able to talk with craftspeople from the era who are still alive and were quite eager to share their knowledge." - writes Burg.

Burg continues to explain that Haigh's "valuable resources" with prop houses provided her with period equipment for the various pictures being shot during Hail, Caeser!.

The article goes on to discuss the unusual varying of colour palettes and styles throughout the film. Due to the paradoxical fact that Hail, Caeser! has several films being shot within this film, the design team used colour palettes to differentiate between films and characters. I feel this allows us to more accurately follow the stories of each character without much confusion. For example - Scarlette Johansson's character DeeAnna Moran has very vibrant colours. She is an aquatic picture star, so lots of blues and greens, but her films are always accented with oranges and reds, alluding to her more seductive nature outside of work. This is concreted when, later in the film, she meets with a lawyer. This scene is very warm-toned, using orange warm light and red accents in the outfits and sets. For the most part, any scene shot outside of the movie lots tend to have this very warm colour palette - this almost sepia-toned look to this film. It enhances the dated feel to the film, highlighting not only the period, but the many seductive scandals which took place during it.

This article was very interesting and it made me want to watch Hail, Caeser! all over again!

[reviewfact-blog]

"Bringing Dead Batteries Back To Life Is Simple!"

Dear Battery User,

Do you want to discover how to:

Easily Bring Old Batteries Back To Life Again

Save Thousands Of Dollars On The Cost Of Batteries Over Your Lifetime

Recondition Old Batteries & Resell Them For Big Profits

Increase The Lifespan Of New & Old Batteries

Well now you can!

And it's actually quite simple to do...

And if you keep reading this page, you'll learn about the new resource that makes this possible!

It might sound crazy but you’ll soon see how any family around the world can now use simple methods to recondition old batteries back life again.

So now, instead of buying new, overpriced batteries every time one gets old or dies...

People can recondition and reuse their old batteries instead…

Saving them thousands of dollars on the cost of batteries over their lifetime.

Over this past year alone...

It's Critical You See This Now Because...

You'll Keep Wasting Hundreds Of Dollars A Year On Battery Costs

(Unless You Do What I'm About To Show You)

As you probably know, batteries are expensive and prices keep going up.

The average family is spending more and more of their hard earned money - each month - on all kinds of batteries…

Just think about it...

How much of your hard earned money do you spend on replacement batteries for your car, tools, laptop, cell phone, electronics, and other devices?

The average person already spends over $15,000 in their lifetime!

And to make matters worse...

The demand for batteries is skyrocketing because our modern world continues to require more devices, tools, and vehicles that are solely powered by batteries...

This means the amount most people spend on batteries, each year, is only going to go up!

But it doesn't have to be like this because...

There's Finally A Better Way...

You Can Easily Recondition & Reuse Your Old Batteries Instead Of Buying New, Expensive Batteries

Did You Know: Battery Reconditioning Is a Simple Skill That Every Person Should Use When Their Batteries Get Old or Die

If your batteries die, DON'T THROW THEM OUT!

If you have a box of old batteries, SAVE THEM!

You can bring these back to life again and reuse them - and save yourself a small fortune!

A lot of people these days don't know this but...

Years ago, many people knew how to recondition their old car battery - to maximize its lifespan.

But nowadays, most people don't know this incredibly valuable and money-saving skill...

Most people also don't know you can recondition many other types of batteries besides just dead car batteries.

And the truth is…

And once you learn this, you'll no longer throw away hundreds, maybe thousands of dollars each year on new, overpriced batteries.

And you can bring all kinds of old batteries back to life again...

You can recondition everything from old car batteries…

To nearly every type of lead-acid battery, like deep cycle, solar, marine, golf cart, wheelchair, scooter, and forklift batteries.

You can also recondition other types of batteries too like power tool batteries.

So if your expensive car battery or rechargeable drill battery is getting old, you can recondition these instead of going out and buying a new overpriced battery.

And yes, there are even simple methods you can use to boost and extend your old laptop, cell phone, AA, AAA, D, and C batteries!

The EZ Battery Reconditioning™ program is the easy to follow, step-by-step system anyone can use to recondition all kinds of old or dead batteries!

...with just simple supplies you probably already have in your home.

In this past year alone, over 19,541 people from all over the world have already used the EZ Battery Reconditioning program to recondition their old batteries back to life again.

Here's What's In the EZ Battery Reconditioning™ Program...

Inside the program (which I’ll show you how to get access to in just a second)…

You’ll be able to use our step-by-step guides that will show you how to recondition nearly every type of battery out there.

The guides are full of pictures and diagrams so you not only read exactly what to do…

You see exactly what to do as well!

It’s like having me and Frank standing there with you, guiding you every step of the way as you recondition your batteries.

Both Frank and I put a lot of time, money, and effort into developing this program because we know how much it can help people.

And that’s why we also wanted to make sure it was accessible to everyone!

So we made the guides something you can download to your computer, tablet, or smart phone, so you can use our simple reconditioning methods ANYWHERE and ANYTIME.

Now, no matter where you are when one of your batteries dies, you can pull up our guides on whatever devices you have with you, and immediately recondition the dead battery.

You can even download and print the guides to use them off-line.

And on top of that…

The simple methods we teach are safe, easy-to-do and can be done by anyone - in any country.

The Guides Are So Easy To Follow (and full of step-by-step pictures and diagrams)...

 Anybody Can Follow Along And Bring Their Batteries Back To Life Again 

(There's No Guesswork... Simply Copy What We Do In The Guides & Bring Your Batteries Back To Life!)

"My car battery was completely dead before I used your methods"

I reconditioned my dead car battery a few weeks ago with your program and it's been working perfectly since then! My car battery was completely dead before I used your methods.

This just saved me hundreds of dollars on a new battery!

--Michelle Jensen

"I still can't believe how great this worked"

I still can't believe how great this worked. My drill battery, several AA and AAA batteries, and my camera battery work great again! This is super fun to do too.

--Kevin Day

"Very Easy To Follow"

Tom, your plans are great. I was able to bring my laptop batteries and several other types of batteries back to life with your methods. Your instructions are very easy to follow. I have a few more batteries I'm going to recondition today also.

--Karl Howard

And many of buyers reviews we can't even show you here

Great opportunity to learn new skills through this digital book

[connectingals]

Welcome to episode five of Connecting ALS.

This month we were able to connect with two very influential figures in the world of ALS. First we met with The ALS Association’s President and CEO, Calaneet Balas, who gave us a window into what the greater organization is working on, including how global research is funded and tracked. Calaneet is also the Chair of the Board for the International Alliance of ALS/MND Associations, so it was really interesting to discuss a range of topics with her.

That interview is followed by a phone conversation with Dr. Nathan Staff from the Mayo Clinic in Rochester, Minnesota. Dr. Staff is deeply involved in ALS research and knows the ins and outs of that universe as well as anyone we’ve ever met. 

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

Transcript:

Calaneet Balas: We can be an incubator and we can help other researchers collaborate and work together and we do that through funding, but they might not have had that opportunity if they hadn't been working with us and some other organizations. So, I always figure it this way - anyone living with ALS does not care where this cure comes from, does not care where meaningful treatments come from, there should be no bounds to that. So, we're gonna fund the best research no matter where that is. 

Mike (narration): Hello everybody and welcome to the fifth episode of Connecting ALS. As always, I'm your host Mike Stephenson from the Minnesota, North Dakota, South Dakota Chapter of the ALS Association.

If you sense the excitement in my voice it's because we were able to connect with two very influential figures in the world of ALS for this episode. We first met with the ALS Association's President and CEO, Calaneet Balas, who gave us a window into what the greater organization is working on, including how global research is funded and tracked. Calaneet is also the Chair of the Board for the International Alliance of ALS/MND Associations, so it was really interesting to discuss a range of topics with her.

That interview is followed by a phone conversation with Dr. Nathan Staff from the Mayo Clinic in Rochester, Minnesota. Dr. staff is deeply involve ALS research and knows the ins-and-outs of that universe as well as anyone I've ever met and we managed to pack quite a bit into our brief call. So, make sure you give that a listen as well.

Alright, let's jump right into our first segment with Calaneet Balas.

Mike (in-studio): We are joined in studio this morning by a very special guest. In from Washington, DC at our national office, the ALS Association's President and CEO, Calaneet Balas. Calaneet, good morning and thanks for joining us on Connecting ALS.

Calaneet: Good morning. Thanks for having me.

Mike: There are so many topics I want to get into, but, for our listeners who may not know your full story and history, can you provide a little bit of background about your career and how you ended up at the ALS Association?

Calaneet: Sure, I'd be happy to. So, like many things in life it's been a long and winding road. I have lived in Washington now for I think close to 15 years or so, but I actually grew up in Iowa. So, I'm from Cedar Rapids, Iowa and, like I said, I went to Washington about 15 years ago. I've been in non-profit that whole time. 

I used to be the, what would be the equivalent of an Executive Director at the Arthritis Foundation for the Metro DC chapter for about five or six years I think I guess and then that organization did some regionalizing. I served as the Chief Strategy Officer for a few years after that for what was then the mid-atlantic region so it was several states from Delaware down to South Carolina. Then I was asked to come and run the Ovarian Cancer National Alliance and I did that for a few years, which was really amazing. And we went through a some merging and some other really great opportunities for that community and during that time the Ice Bucket Challenge happened and a former colleague of mine, who is now my predecessor, asked me if I would come and start working with the ALS Association and tried to work on Mission Strategy, which I I did, I eventually became the Executive Vice President of Mission Strategy. 

So, really with the goal of integrating all of our mission pillars together on a national level, across the country, and then about a year and a half ago or so the board asked me to take this job. And, it's amazing, it's an amazing job at an amazing organization. So, that's the short of my story. I hope that answers your question.

Mike: It does and we feel lucky to have you at the helm. I know families in this region that have been greatly comforted by your leadership at the ALS Association. And, speaking of the Association, our mission of course is to discover treatments and a cure for ALS and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.

Calaneet: Right.

Mike: There are a number of ALS organizations doing some fantastic work in the space, but that mission, the ALS Association, are we in a unique position in terms of addressing the disease from multiple fronts?

Calaneet: We are in a very unique position and that actually is what sets us apart from other organizations. I always say that the ALS Association is the only organization in our country that serves the mission as what I call a 360. So, we have a lot of other great organizations that might be focused in one area or another, but we're trying to attack on all fronts by providing funding for research, we're the largest funder in the world for research outside of the NIH private funder. We, you know, obviously do public policy and advocacy work and that happens on a national level, but also in some of our states as well.

Mike: It's a big part of it.

Calaneet: And it's a big part of making sure that people have access to treatment and care. And then of course we provide care, on the ground. And I'm sure many people here have benefited from the services and those are things we'll want to keep doing. And we're also very uniquely positioned because we serve as a global leader and now, you may or may not be aware, I chair also the International Alliance and I have come to learn how important the role of this organization is not just within our country, but how people are looking at us from around the world. So, we are quite uniquely positioned.

Mike: I can imagine. How has that experience been with the National Alliance, getting to meet others from around the globe and hear about what they're working on how it's progressing? I'm sure that's been exciting.

Calaneet: Oh, it's fascinating. It really is and what it has shown me is how fortunate we are. And, there's so much work that still needs to be done in so many countries including our own, of course, but..I've learned from people, I've learned from my colleagues in other countries, I've learned how we can think about sharing resources and how we can think about maybe even reinterpreting some of those resources like, almost literally. You know, translation and things. There are a lot of things that we have that people in other countries are desperate to get their hands on and so it's been a really fascinating experience. One that I really like quite a bit.

Mike: I can imagine.You mentioned the Ice Bucket Challenge earlier and we're now five years removed from that amazingly. That, of course, was the moment that changed the course of ALS research and care forever. For many that were a part of that original challenge, they hear and see the dollar amounts that were raised from that event and it's natural for them to ask questions like, "Where did all that money end up?"

Calaneet: Sure.

Mike: And, "How much closer are we really to meaningful treatments?" The answers are obviously pretty complex. 

Calaneet: Yeah.

Mike: But, how do you best explain the impact of that original Ice Bucket Challenge?

Calaneet: The Ice Bucket Challenge is a catalyst and probably one that we won't even understand for many years to come as to what that long-term impact will be. I can say that when we look at how much research is now being done it's significantly more and I would encourage everyone who's listening to go on to our website because we have listed out where all of the dollars have been spent. So, you can take a look at all the research and the care services and everything that we've spent. We've actually spent more money on mission since the Ice Bucket Challenge than was raised in the Ice Bucket Challenge.

Mike: Wow.

Calaneet: So, sometimes it is complex. People think we still have all this money. We're actually doing really well on raising money too. And that's important because we want to keep infusing those dollars into research and all the care and everything that we need to do. When you ask the question of, "Are we closer to meaningful treatment?" we really are. Some of the things that I really enjoy doing are going to the research conferences and if you like research, and you're a little nerdy like me, you like to see how excited these researchers are which is significantly different than where they were just a few years ago. We have three treatments now in Phase III clinical trials.

Mike: That's huge news.

Calaneet: That's huge. We have over 20 treatments in Phase II clinical trials. I firmly believe that we are very very close in the next several years to some meaningful treatments coming out for the community and I'm very excited about it. 

Mike: That's amazing and it's really, you kind of alluded to, about sustaining that momentum. Catalyst is such a perfect word and that initiated this huge kind of snowball effect where we started to make more progress than had been made in the previous three decades in about a three-year stretch and now we're seeing some of those fruits come to bear and real progress on the research side and I know that we're, we haven't quite yet achieved that major breakthrough that everyone is hoping for and waiting for, but it does it definitely feels closer than it's ever been.

Calaneet: It's definitely closer than it's been and what we see is, you know, when we put money in to research so do others. Right? So, for example, we have already completely spent forty million dollars in research and what I mean by that is most research grants are multi-year, right? So, we are still in the process of spending another nearly fifty million, but it takes time too for that to happen. That forty million leveraged another hundred and twenty million into our space. That's brand-new. Right? So, when I say that there's a lot more happening, there really is and there are a lot more researchers working, together they're a lot more researchers in the space, and they're more dollars going into our space. So, catalyst is why I use that word.

Mike: Yeah and thank you for clarifying because I think for some folks, particularly people like me with a limited understanding of research, the concept of milestone based research funding can be a little confusing, but having gathered all those resources following the Ice Bucket Challenge, it would not have been wise to pour all that immediately into current projects, correct? You want to ensure that things are progressing the way you want them to and need them to and you fund it as it goes along in multi-year trials and phases, is that right?

Calaneet: That's exactly right. So, what happens, we did immediately put a lot of funding into research that we knew was going unfunded. Right? And, so Project MinE is a perfect example of that. That we pivoted within...I think within a couple of months and started putting resources there. But we didn't, what we did not want to do was to put let's say a hundred million dollars into one potential therapy and if that didn't work out, where would we be?

Mike: Exactly.

Calaneet: So, we came up with a research strategy all across the board so that goes from our fellows that are just starting out in the field and we want to make sure that we provide enough funding for them to stay in the field and continue to be researchers long-term, all the way it's through phase two clinical trials, right? And milestone funding is just a common practice of research because you want to achieve a certain outcome and if you can show that you can achieve it then that next phase of funding comes. And sometimes we have studies that they go along and they get a year, eighteen months into it and they recognize "nope, we're not gonna achieve that milestone". It would be unwise then to spend more money in something that's not working. So, then we pivot and we put dollars back to where we think they might work.

Mike: Constantly re-evaluating and making sure that we're investing the right way.

Calaneet: Always.

Mike: That's great to hear. I hear "the world is our lab" when referencing the ALS Association funded research and I think beyond just a kind of clever way of saying it, what are the benefits of working collaboratively with scientists all over the globe?

Calaneet: The benefits are endless, right? Again, back to Project MinE. So, that is a perfect example of a global project where when we're pulling resources from all across the world now we're able to take a look and say "okay, can we find new genetic markers"? And we did. Right? Ee found several since that has started. Additionally we can be an incubator and we can help other researchers collaborate and work together and we do that through funding, but they might not have had that opportunity if they hadn't been working with us and some other organizations. So, I always figure it this way - anyone living with ALS does not care where this cure comes from, does not care where meaningful treatments come from, there should be no bounds to that. So, we're gonna fund the best research no matter where that is.

Mike: That's a great way of framing it. And, we're talking a lot about research Calaneet, you mentioned the website. I want to encourage anyone that wants to learn more about the progress being made and where the Association is investing. Visit alsa.org/research. There's a ton of great information on there, there's a research tool kit on their. Calaneet mentioned the list of current projects and studies that are being funded. A ton, a ton, of really wonderful data that you can mine on that website.

Calaneet: And opportunity to find clinical trials, get involved, so I would underscore everything you just said.

Mike: Yeah, of course of course, and finding those trial is a big part of it. Access for folks that are looking for those trials is key. Clearly, funding and guiding research, big part of what the ALS Association does, but we shouldn't overlook the programs and services provided to individuals and families by chapters across the country. There's innovation happening in that arena as well. What do you feel like has changed in terms of care and support over the last few years?

Calaneet: Well, you're completely right; we should not overlook our care services programs across the country. They're some of the most important things that we do and providing help to individuals and their families everyday. I think probably two areas in which I've seen significant change - one is technology and we've been able to take a lot of that Ice Bucket money and also invest in technology whether that's voice banking, we've been doing some research with Pison Technology which is really cool stuff so check that out if you're interested. 

And then the other is we've been able to support so many new clinics. So, we have, I think, more than doubled the amount of clinics across the country that we are supporting. We went from 33, I think, certified treatment centers to now over 60 certified treatment centers. We added recognized treatment centers as a new program so we're actually working with over 120 clinics across the country and different levels and that is, when you talk about access, that's some of the most important work that we can do is to make sure that those centers have resources that they need to help people everyday living with ALS all across the country.

Mike: Tremendously important and for folks that are maybe living in rural areas or a little bit kind of outside the major metropolitan regions, needing clinics they can get to to meet with doctors and clinicians who can specify and help them with their disease progression is key because if you have to drive six hours for a clinical visit and then six hours back that's gonna that's really gonna change.

Calaneet: Yeah, and what happens in many of those situations is the people stop going to clinic. It becomes expensive, how often they have to drive that six hours, they're staying overnight in a hotel, right? Driving back. And of course just the wear and tear on people. So, I hope and I'm starting to see a lot of also technology used to help people at a distance and we're starting to think about that and how we do telehealth and more opportunities for potentially underwriting telehealth and opportunities for I'm hoping to get you know insurance coverage and things like that so that that becomes a real option for people.

Mike: Telehealth a big topic across medicine right now and I think we've probably mentioned on each episode of the podcast that we've had because it's just it's on people's minds and again it comes down to a question of accessibility. And because technology's improved so much over the last four or five years that you can now do so much on a tablet, whether that's an iPad or an Android tablet or even your phone; being able to connect via video, speak to doctors, speak to clinicians, talk about what you're going through, that's a game changer.

Calaneet: Yeah, it could be a big game changer. I know it's something that parts of the VA are looking into. There are other clinicians around the country that are looking into. And I do know of a clinician who was recently working on trying to do a clinical trial through telemedicine and talk about a game changer there. So, I think the options are and the opportunities are really high and that's exciting.

Mike: It is, it is and the technology, just on a global scale everything changes so quickly, changes so exponentially, from month to month, so I think we're all benefiting from those changes and hopefully that just means better care and easier access for families living with ALS.

Calaneet: Exactly.

Mike: I also want to talk a little bit about advocacy because, as you said, that is another pillar of the ALS Association's work. On previous episodes we have talked to people living with ALS about what they're hopeful for on both the state and federal levels. What is it that the ALS Association is prioritizing from a legislative standpoint at the moment?

Calaneet: So, first we always prioritize funding, research funding, and that will be a staple that we will continue to fight for every year until we don't need it anymore. And I'm excited for that day too. 

And then we always focus on if there are going to be any barriers to access. So, for example, a couple of years ago there was a barrier to some complex rehab technology that was being proposed and so we we worked with coalition, we fought against that , we won and that's very important. And now we're seeing a similar barrier being proposed for ventilation. And so that's a big priority for us this year. Again, we're working in coalition and we are seeing traction for sure. 

Another big initiative that we've been pushing for about two years now is waving that SSDI five month waiting period. And we are also starting to see some really good traction, certainly in the house and even in the Senate, so the question is can we can we get it through? You know. That's what, I hope your listeners and people across the country keep pounding the pavement or pounding the keyboard and sending in to their members of Congress to let them understand how important those are. 

And, you know, our issues change all of the time. We're always trying to make sure that there's going to be access to therapies and I do believe on the horizon, as we start to see hopefully those treatments come to fruition, we're gonna have to do a lot of work to make sure people have access to those treatments and they're affordable and that's probably one of my biggest concerns at this point.

Mike: Yeah, I'm sure, and it has to be something of a benefit to be where the Association is headquartered in DC to have access to those legislators to say, you know, "We're still here, and we're going to keep bugging you until we get what we want and need." and that's probably a nice thing to have that kind of access to them.

Calaneet: Yeah, it's really important and it's important, just like anything, for relationship building so they know us, you know, we work with not only people on the hill, but a lot of our agencies work very closely with FDA and, you know, NIH and others so that kind of access is really important so we're always in the forefront of legislators' minds as well as agencies and that that helps us a lot.

Mike: And, as you said, for the individuals and families that are living with ALS, it's so critical for them to keep doing all they can in terms of reaching out and making noise and letting our legislators know that these are really important issues that impact a ton of people around the country and they're not going to go away until we have their help.

Calaneet: That's right and I always say, you know, like I said I've been living in Washington for 15 years, I'm always going to advocate for people living with ALS and I'd advocate for others as well. But, the legislators listen to people who live in their districts and they need to know that this issue is actually important to the people who are living in their district. 

Sometimes I get the question, you know, "These form letters, do they really matter?" you know. And you can always change the form letters a little if you wanna personalize them, but they do because what happens in a congressman's office is they count how many people have actually contacted us about this issue and, you know, in the quote, unquote the olden days when people actually sent in snail mail; they literally would pile them on the table and keep a count of which issues they were hearing from constituents. Now they just keep an electronic tally, but it's the same thing. 

So, hearing from people living in the district, living in the state, is as if not more important than hearing from staff in Washington, DC.

Mike: Absolutely. It all adds up. Speaking of hearing from folks in the ALS community; we have the privilege of talking to folks in our region about how the Association is providing support to them and what else we can do to help. You, of course, experience that on a much larger scale at the national level. What is it, I suppose, beyond aggressively funding and supporting research, which we know the Association will continue to do, but what are people hoping that the ALS Association can help with down the road?

Calaneet: Yeah, so we do ask this question and we ask it from people all over across the country. We do community surveys every other year, we also have a program that we're recently starting which is called ALS Prefer or and it's about preference you know so it's actually now morphed into a much larger program called ALS Focus and with that it; what do we focus on? Right? And how do we work with folks in Washington to help make that happen? And I will say the number one thing that I hear about is home care.

Mike: I bet.

Calaneet: The ability to secure it, the ability to pay for it, and making sure that that home care continues forward as someone needs in the way that they want, right? That I think is probably going to be, not probably, it will be one of the number one issues that we will continue to tackle for quite some time to come. So, whether that's through a legislative process, through working with Medicare and Medicaid or CMS. Also working with home care agencies and educating the agencies on what is reimbursable and what's not. Those are things that we'll be very focused on for quite a while.

Mike: Home care, so critical, and it's such a costly thing to provide so understanding the needs of the ALS community and, as your disease progresses that you're going to require more intensive care and more attentive care and having access to that key, so if we can find a way to fund that I'm sure that's top of mind for so many folks. 

Calaneet: It really is and we hear from so many people who have lost a lot, whether that's completely gone bankrupt or lost their homes trying to keep, you know, this service available to their loved one. It's really unfortunate, but it's not, we're not the only community that faces this, but for our work it's some of the most difficult. 

Mike: Yeah, it's a big one. My last question for you Calaneet - gonna ask you to look into your crystal ball. 

Calaneet: I don't have that and I don't have a magic wand, but if you have one I am up for it. 

Mike: I know that no one can predict when that next breakthrough is going to happen that may lead to an effective treatment for ALS. For anyone living with disease time is obviously against them, but as someone who is deeply involved with the strategic planning and shaping the next phase of support for those in need; for what kind of future are you preparing the organization?

Calaneet: Yeah, so as an organization we're going through a lot of transformation. Right? The Ice Bucket, again, kind of infused that opportunity and what I'm looking at is when those treatments come to fruition can we as an organization continue to support at the level that we're at, if not higher, more people living with ALS. That's the goal, right? That's the dream. 

So, that's what, when driving to the hoop we're gonna drive toward making sure that our organization has enough bandwidth to support more people living with this disease. And, that's gonna take a lot more resources; it'll probably take some different thinking too for us. 

You know, we don't know what those future needs might look like. Some of the things we do now might not even be relevant, you know? We might need more of what we do, maybe we need more DME loan closets across the country, right? We need more services going out and checking on people. So, that's my crystal ball future look is how do we as an organization scale up and ramp up to make sure we can serve all people living with ALS.

Mike: And I've heard other neurologists and experts in the field say something similar where when we do have that breakthrough and we have a treatment that's going to slow the disease down for a large portion of the population; it's a good problem obviously, but the result will be more people living with the disease for longer periods of time and higher quality of life. So, as you said, it would just be an adjustment. How do we both maintain the current level of service and increase the level of service for a larger population. 

Calaneet: Right. And how do we make sure that the services that we're providing are the services people need? And that might look a little different and I was actually recently speaking with a couple of people saying that we're talking with folks at MS and other organizations and where those disease communities really experienced a big shift over the last 10 or 20 years and how do we kind of borrow their playbook a little bit and say "what did you experience?" and "how can we prepare our organization?" and understand what might be in the road ahead.

Mike: Yeah, the fact that we're even having this conversation is so great 

Calaneet: It is.

Mike: because even four or five years ago there's no way we'd have been able to speak about this confidently and that we're talking about it now is, it's a good thing.

Calaneet: It is a great thing.

Mike: Well, it's been really great to have you on the podcast Calaneet to address things from a national perspective at the ALS Association. Thanks so much for your time today.

Calaneet: Well, thank you for having me and this really has been a pleasure and for those of you who are in the area I highly encourage you to come see this new office space. It is amazing. I'm a little jealous I have to admit, but anyway thank you so much for having me on I really appreciate it.

Mike: Thank you.

Mike (narration): I hope you appreciated hearing from Calaneet on how the ALS Association continues to address this disease on every front and why furthering research remains one of our highest priorities. 

Speaking of research, I mentioned we'd be connecting with ALS researcher and neurologist Dr. Nathan Staff of the Mayo Clinic. So, let's transition directly into that interview.

Mike (in-studio): On the phone with us this morning from the globally recognized Mayo Clinic in Rochester, Minnesota is Dr. Nathan Staff. Good morning Doctor, thanks for joining us today.

Dr. Staff: Good morning.

Mike: So, in addition to overseeing the well-known ALS Clinic at Mayo, Dr. Staff studies disorders that damage the peripheral nervous system, ALS among them, and clinical trials in ALS are one of his focus areas so we figured who better to talk to about that very subject. And, before I start peppering you with the additional questions I have Doctor, are you able to tell us a little bit about the research you are currently involved in at Mayo knowing that, of course, there are some details that you can't really get into?

Dr. Staff: Sure, happy to. So, you know, I think two major efforts that we're undertaking here at Mayo Clinic in Rochester are - one, we're doing stem cell trials for ALS. So, we're both involved in the Phase III Brainstorm NurOwn trial, which is a large multi-center study that's looking at the benefits and safety of repeated injections of Mesenchymal Stem Cells, the NurOwn product, in patients with ALS. And we also have a study that's a Phase II study looking at Adipose ,or fat derived, Mesenchymal Stem Cells delivered to patients with ALS. 

Another major effort that we have is collecting bio samples and providing clinical information about those bio samples. We collaborate closely with Mayo Clinic in Jacksonville who is a internationally known center for pathomechanisms of ALS disease both with doctors Len Petrucelli and Rosa Rademakers there and so we provide them with samples so they can better understand why ALS occurs and what things we can do to try to prevent it and treat it.

Mike: Sure, sure. Well thank you for giving us descriptions of those. I want to ask some more specifics about stem cells and other things specifically, but first just more broadly. Talking about ALS research there is a distinct difference between hope and optimism and both words are used pretty regularly in the world of ALS research and I know that we're all hopeful for a turning point in the near future, the major breakthrough that is going to change how we treat and talk about ALS. But, the word optimism keeps coming up when I mention research and it seems to mean something different to everybody. Let me ask you a Dr. Staff, what are you most optimistic about in the ALS research space?

Dr. Staff: Yeah, I mean, I think there's a couple things that really lend themselves to being more optimistic about ALS research than we may have been in the past. I think one is that we are definitely understanding the disease better. You know, there's large amount of research groups that are focusing in on mechanisms of how ALS occurs. Both from figuring out the genetics of ALS, but also the kind of the cell biology of how different things happen within the cell that lead to motor neuron death. And it's being really approached from amazing number of areas. 

You know, some of it is in animal models, some of it is cell models that are from patient derived sources, there's the samples that patients provide when they're in clinic and volunteering for research efforts. And then there's also a more basic model such as Drosophila (fruit fly) and Zebrafish that really are contributing to our knowledge about the disease. And the more we understand about the disease, from a basic science standpoint, the more targeted we can be in terms of developing therapies to interrupt those pathways and hopefully, you know, treat the disease better than we're currently doing. 

So, that's a lot of excitement and frankly much of that research has been supported by not only the National Institutes of Health, but also foundations such as the ALS Association, which has pumped a great deal of money into this research effort. 

And then, I guess, the second main area of optimism is that some of the therapies that are coming through currently are kind of novel approaches to going after this disease that hadn't been tried before. I think the one that probably everyone is most optimistic about is gene therapy. 

So, in gene therapy there are ways of actually impacting specific genes that are known to cause ALS. So, there's a study now through company called Biogen where they're using a small molecule that is kind of like a piece of DNA that can be delivered into the spinal fluid and then goes in and actually blocks the ability of a bad gene that is known to cause ALS. Specifically looking at the SOD1 mutation, which is, you know, a gene that was the first one that was described to cause ALS. 

And so, those trials are moving through into Phase II and Phase III, which are, you know, getting closer to patients. And I think part of the reason people are more optimistic about this than other therapies that we've had in the past is that this particular approach to treating a genetic disorder has been shown to be helpful in other diseases so there are FDA approved therapies for spinal muscular atrophy, Duchenne's muscular dystrophy, transthyretin amyloidosis; all of which have shown very clearly to have sometimes even dramatic effects on the disease especially in the case of spinal muscular atrophy. So, knowing that it works well in one disease that's a genetic disorder gives us a lot of optimism that it may be helpful for our patients that have a genetic form of ALS.

Mike: Right. That makes a lot of sense and I can see why the scientific community would be excited about that potential. And I've heard you talk about the SMA kind of analogy before and, as it relates to gene therapies, when we're talking about how this could impact familial and genetic forms of the disease; those kind of therapies could also have an impact for people with sporadic ALS correct?

Dr. Staff: Yeah, I think that, you know, the...as I said, the current trials are really focused on patients who have a specific mutation that's causing their ALS. This sort of therapeutic approach where small molecules are targeting specific genes could also be extended to targeting specific pathways that we are understanding to be more and more critical for the development of ALS. So, you know, a gene that may be...need to be shut down to help treat sporadic forms of ALS, forms of ALS that don't have genetic basis, may still be amenable to this sort of approach so I think there's a lot of excitement in that realm as well. It's a real targeted therapy that hasn't been able to be done before.

Mike: Right. And that, I mean, we've been talking about this summer being the 5th Anniversary of the Ice Bucket Challenge and that influx of funding that had such a huge impact on the number of studies available; this development in gene therapy we can tie that directly back to a lot of that influx of funding right?

Dr. Staff: Definitely.

Mike: That's great, that's great. It's good to hear about the progress always. I also want to ask you about stem cells; another area of research that's really been trending in the public eye for a number of years and I know that you're doing a lot with there at Mayo, but most people without the science background or understanding to really grasp how stem cell research is done, and I'm including myself in that group, we tend to lump it all into kind of a hazy sort of notion about how we think stem cells operate and are used in research. I guess my question is Dr. Staff, can you describe how stem cells are commonly used in ALS trials?

Dr. Staff: Sure. Happy to do that. So, you know, I think you know the term stem cell therapy obviously is a loaded term and comes with a lot of preconceived notions of what that might be and I think oftentimes what people think stem cell therapy can provide is not currently what it's able to provide. And I think, you know, in some ways rephrasing it from being a stem cell therapy to just being a cell therapy is maybe even a bit more appropriate because I think what's happening currently with stem cell therapies is that the cells are being used as a vehicle to provide biologic factors that may help slow down the disease. 

Specifically what we've been working on, both in our projects that we've started here at Mayo, but also the our industry sponsor BrainStorm, is looking at a specific type of stem cell called the Mesenchymal Stem Cell sometimes referred to as Mesenchymal Stromal Cell or MSC for short; and so that particular cell is, while it is a stem cell, it's only able to turn into fat cells or cartilage or bone or a connective tissue. It's not expected to turn into neurons and replace neurons, which would obviously be a great thing to have for ALS. What these MSCs are thought to do is that they can get into the nervous system and provide growth factors, so provide proteins that are known to keep neurons alive; we've lots of data on this over the years how growth factors are helpful to keep neurons alive, but then also they can modulate the immune system. 

And there's significant body of evidence that's been building showing that the immune system probably does play a role in at least the rate of progression of ALS, but maybe even the pathogenesis of ALS as well. And so, getting these MSCs into the body can provide growth factors, modulate the immune system, and hopefully slow down the disease. And I think, you know, as I said MSCs can really only turn into fat cells or bone cells or connective tissue and I think that gets sometimes thought to be similar to maybe embryonic stem cells or neuronal stem cells and so you know what I like to think of stem cells as is kind of a family tree and so kind of the original base of the family tree is the embryonic stem cell, which is you know the fertilized cell that can become any cell in the body; that fertilized egg can become a neuron cell, it can become a skin cell, it can become a gut cell, and it can really become anything. But, as that family tree grows there are branches that go off to different aspects of it and then those stem cells at that level cannot become any cell in the body, they're really kind of defined to become certain types of cells. So, the MSC, as I said, can become bone or cartilage, but then on the other another tree branch may have the blood stem cells, which can become all the blood cells in the body, and so those blood stem cells are the ones that are used typically when we think of stem cell transplants for patients with leukemia or lymphoma.

Mike: Oh, sure. Okay. Yeah, thank you for that analogy. That really kind of, in a simple way, gives us a look at the way that stem cells are used and it's helpful to think about it in terms of a family tree like you said. I'm learning a lot from this conversation and I'm sure that means our listeners are as well. The other thing, before I forget, that I want to mention is how much you know about platform trials and that is again another kind of buzzword that seems to be popping up online and across social media and it's something that people know we should be talking about, but don't necessarily know where to begin. So, can you give us a look into platform trials and how that concept applies to ALS research?

Dr. Staff: Sure, I'd be happy to. So, you know, as I mentioned before how the science, the basic science of understanding how ALS occurs and all the pathways and pathomechanisms of ALS disease; that science has really matured and gotten much more sophisticated over time. In the same way that that has gotten sophisticated, the science around how to conduct clinical trials has become much more sophisticated over time. So, when we generally think about clinical trials we think of it in a fairly regimented fashion. So, there's a Phase I study, which tends to be small numbers of patients, first time the drugs being used in human, and really looking at safety making sure that it isn't something that's that's horribly unsafe to be using in humans.

Mike: Sure.

Dr. Staff: Then a Phase II trial is the next phase and there you're starting to look still at safety, but now starting to get some more information about whether there's any benefit as well. So, safety and benefit, a little larger study, sometimes trying to figure out what's the right dose to use in a clinical trial. And so, at the Phase II level it's a really critical stage of the drug development program in that the Phase II studies really are the time where they often are deciding whether to go forward in to really trying to develop this into an FDA approved medication.

Mike: Right.

Dr. Staff: And so, often times things get roadblocked in the Phase II trial. The Phase III trial then is kind of the penultimate trial where it's, you know, hundreds and hundreds of patients, typically with a large placebo controlled the study, following it over time, and really trying to prove whether or not there's any benefit for using that drug in a specific disease. So, kind of this Phase I, Phase II, Phase III and then ultimately FDA approval and out into the marketplace. 

Platform trials are really, been aimed primarily at the Phase II level. And so, what's interesting about a platform trial is that it totally goes at the development of a clinical trial in a different fashion. So, typically, say we have you know three or four drugs out there that are going into Phase II trials. Each of those Phase II drug trials is going to have its own clinical protocol, which is really a rule book on how that trial's going to start from beginning to end and then each of those trials is also going to have to go through an institutional review board or ethics committee. Each of those has to interact, often in lengthy fashion, with the FDA to get it all up and running; oftentimes there's a lot of infrastructure that's built for each Phase II clinical trial to get them off the ground. And so, you've done this in four or five different drugs at the same time and really kind of honestly wasted  some efforts as that's being built. Another thing that's done is that oftentimes they have placebo, so each of those groups, each of those trials, is going to have a placebo arm to the trial; which means a lot more patients aren't going to be receiving the active therapy. 

What a platform does is instead of having, you know, protocol for each different drug, from the beginning what's set up is one protocol, so one kind of rule book for how the Phase II platform trial is going to happen and the infrastructure is all built for that one trial, you have the research organizations in place, you have the ethics boards in place, you have the FDA in place, all the statistics are set up in the beginning of the trial and then what you do is you just start running the drugs through that one platform. So, you can have four or five drugs that are going through this one protocol and they can kind of come in one after the other and really increase the speed by which we can push drugs from that Phase I study out to the Phase III study. 

Mike: Right, right. It sounds a lot more efficient.

Dr. Staff: Yeah, no, it really is. And we've really built off of what the oncology groups have done over the years. This was...started to come into play over the last decade in oncology trials and they set up all kind of the methodology and the statistics that go into this, which are actually quite complex, but ALS has really been on the forefront of non-oncologic research in terms of developing these clinical trials in a way that really is most efficient. And I should say this is  really being shepherded and led by Mass General Hospital. They're really the ones that are setting up this platform trial, but what is going to happen is it's going to have multiple centers throughout the country that are gonna be part of this platform trial so hopefully they'll be close to most patients throughout the country.

Mike: And, in your opinion, is that...are we gonna see more trials set up this way? Is that kind of where you think ALS research is heading?

Dr. Staff: Well, I would hope that most of the drugs that are going into a Phase II program would at least consider going through the platform route because that way they can quickly get into the clinical trial, they can quickly get to patients, and then companies can quickly get answers as to whether that's a drug that they want to take forward and spend the much larger amounts of money that they would need for a Phase III trial. 

Mike: Sure. It seems like a really logical approach and hopefully one that we learn more about and see more of in the next few years. And that's a nice kind of segue into what's my last question for you Dr. Staff and I tend to ask this of all the research Doc's that we speak with and again everyone has a little bit different answer, but it's really just what is next? You mentioned gene therapies, we've talked about stem cells and platform trials, what do you think is going to be the next kind of key piece? Not necessarily a breakthrough or the specific treatment, but what do you think is going to be the next key piece for us to move forward on ALS research?

Dr. Staff: Yeah, well I'm hopeful that we can get more targeted therapies for sporadic ALS. So, you know, a lot of the basic sciences pointed towards some specific mechanisms that happen in everybody who gets ALS; whether it's from a genetic form of ALS or from a non-genetic form of ALS. There's some common pathways that seem to be involved for everyone. And, you know, I think if we can start to develop very targeted therapies for those end pathways that we'll really be at the cusp of being able to understand whether we can really bend the curve of this disease early from the onset.

Mike: That's an encouraging answer to hear and Doctor it's been so great to talk to you about this range of topics and be able to tap into your expertise. I want to thank you again for taking the time Dr. Staff. It's so great that we have access to your mind and your knowledge at Mayo and also thanks for everything that you do for the ALS community in terms of advocating for those living with the disease. We appreciate you being in this world.

Dr. Staff: Well, I'm happy to help out and happy to have spent some time with you this morning.

Mike: Thanks a lot.

Mike (narration): And that will conclude episode five of Connecting ALS. A couple of quick housekeeping items before we let you go. First, we really appreciate those of you who have found us and rated us on your favorite podcast services like Apple Podcasts and Spotify. Those ratings and comments really help us grow our audience. For anyone who hasn't yet subscribed, you can visit ConnectingALS.org and follow the links to ensure you hear from us on the second Thursday of every month. 

And remember you can track us down on Facebook and Twitter and tell your smart home devices to play the pod by saying "Hey Alexa, play the podcast Connecting ALS". 

This show is produced by Garrett Tiedemann from the headquarters of the ALS Association's Minnesota, North Dakota, South Dakota Chapter in St. Paul, Minnesota. Thank you for listening and keep an eye out for our next episode on Thursday October 10th.