The Brayden Alexander Global Foundation for Hydranencephaly, Incorporated; doing business as Global Hydranencephaly Foundation. MISSION: The Global Hydranencephaly Foundation is a family driven nonprofit organization dedicated to providing families faced with a diagnosis of hydranencephaly, the opportunity to help their child live the quality of life he or she deserves. The family-to-family resource network is the foundation of this mission; an ideally structured, multi-faceted community for the dissemination of invaluable information, sharing of effective care management strategies specific to the unique circumstances a family faced with diagnosis of this rare neurological condition may encounter, and individualized, life-long support. Emphasis is placed on the development of empowered parent advocates, strengthened by availability of comprehensive information, geographically tailored resources, and a confident awareness of the rights children have to quality, compassionate care without discrimination. We embrace the opportunity for continuous growth through the expansion of additional collaborative partnerships with like-minded organizations and reputable community businesses. Through community-based awareness campaigns and the planned infiltration of the medical community, we aim to conquer the misconceptions that exist surrounding this diagnosis and portray a clearer picture of the possibilities that exist for these children; giving multiple reasons to “Believe in the Impossible!”
Don't wanna be here? Send us removal request.
Statistics
We looked inside some of the posts by globalhydranencephalyfoundation and here's what we found interesting.
Average Info
Notes Per Post
4
Likes Per Post
1
Reblog Per Post
2
Reply Per Post
0
Time Between Posts
18 days
Number of Posts By Type
Photo
9
Text
2
Note
1
Link
5
Last Seen Tumblr Blogs
Fun Fact
25% of US internet users with an annual income of $80-100K use Tumblr.
Photo
The CUTEST rubber duckies ever... Bumblebee ducks will be at the Global Hydranencephaly Foundation resource table this Saturday from 10-2 at Evergreen Park in Bremerton. Let the kids test out the new playground and check-out the resource tables during the grand opening of Bremerton Accessible Play's first playground, created so that ALL may play. #BelieveInTheImpossible #hydranencephaly #accessibleplayground #kitsapcounty (at Evergreen Rotary Park)
0 notes
Photo
Wear your awareness... or share it with the world: purchase awareness merchandise options at http://www.hydranencephalyfoundation.org/merchandise.html
0 notes
Photo
We have the BEST family support network... and extended family support network. A belated thanks to mylife-tubswife for your support to our mission at Global Hydranencephaly Foundation
My family ;) Walking for Joey! #hydranencephaly #RIPJoey
2 notes
·
View notes
Text
Global Hydranencephaly Foundation has invited you to like their Facebook Page
You shared your email with Global Hydranencephaly Foundation and they've sent you this invitation to like their page on Facebook Nonprofit on a global-wide mission to shine a brighter light on hydranencephaly & the families it has, is, or will touch. "Believe in the Impossible!"7,733 likes · 142 talking about this Global Hydranencephaly Foundation To sign up for Facebook, follow the link below: https://www.facebook.com/n/?r.php&oid=240008756064257&medium=email&mid=HMTcxNDM1MDcyOnVvZnB2ZW5yeWpzYmFAdHVtYmxyLmNvbToxMjQ&n_m=uofpvenryjsba%40tumblr.com To view the Global Hydranencephaly Foundation Page, follow the link below: https://www.facebook.com/globalHYDRANENCEPHALYfoundation
0 notes
Photo
Post-awareness walk grub time! #fatpiepizza #fairhavenbham (at Fat Pie Pizza)
0 notes
Photo
This boy is adorable!! #representin #braydenalexander #hydranencephalyawareness (at On The Grass @ Boulevard Park)
0 notes
Photo
10 posts! woot!
0 notes
Text
I'm really quite clueless what the point of tumblr is... however, checking it out a little more in depth and totally open to the possibility of reaching people our mission may not otherwise reach! That said, welcome to advice and suggestions of how to best utilize this platform to not only connect with more families, but to network with potential business partners, celebrities, or experts in the field of complex medical needs; especially hydran.
#tumblr#confused#hydranencephaly#hydranencephalyawareness#rare disease#nonprofit#BelieveInTheImpossible
0 notes
Note
WHAT IS YOUR EARLIEST HUMAN MEMORY?
Earliest human memory as the nonprofit entity represented here: my back-and-forth debate over several months of whether to jump in head first with a crazy idea to make a nonprofit in around September 2010. And so it began with a quote from a movie, "Bee Movie"
0 notes
Photo
It's Hydranencephaly Awareness month and there is NO better time to sign up to receive our blog posts right in your email inbox... http://braydenalexanderfoundation.blogspot.com
0 notes
Link
June is Hydranencephaly Awareness Month, across the globe... Join us in raising greater awareness and helping to arm unsuspecting new parents the information and support needed to help their child live the best quality of life possible!
0 notes
Link
From our bee-buddy, Haydin's mommy:
"Haydin is a young boy who was born with hydranencephaly, meaning he is missing 75% of his brain. He was never thought to be able to make it to his first birthday but this year he's turning 5! To celebrate this huge milestone we are raising money to get his to San Antonio so he can go to Morgan's Wonderland, a theme park specially made for handicapped children.
The money raised will go towards airfare, hotel fees, food, a wheelchair accessible van rental, and a possible trip to the San Antonio Zoo. We are looking at doing 4 days in San Antonio so Haydin can really enjoy himself in the warm weather and all the fun. Please feel free to pass this page along to friends and family and help Haydin reach his goal! - See more at: http://www.youcaring.com/other/help-haydin-get-to-morgan-s-wonderland-for-his-5th-birthday/123292#sthash.EphXxKbJ.dpuf"
0 notes
Photo
✔️Have been drinking huge cups of motivation lately, courtesy of @starbucks #Verismo #believeintheimpossible #globalhydranencephalyfoundation #GHF (at Global Hydranencephaly Foundation At Harper Homestead)
0 notes
Link
What's this word: hi-dran-en-cef-a-lee ??? 1 in 100,000 babies across the globe are diagnosed...learn more:
0 notes
Photo
HYDRANENCEPHALY: "Among the ever-growing list of labels attached to the little lives touched with a diagnosis of hydranencephaly, lies the term "medically fragile." A term that many of us have likely used time and time again, without even thinking twice... a term that's used to define many children who have forever been blessings in all who are fortunate to have them in their lives. It's an official title, granted to only the true super heroes of the bunch." ~Global Hydranencephaly Foundation
0 notes
Link
0 notes
Link
Hydranencephaly is a rare neurological condition, knowingly occurring in fewer than 1 in 10,000 births across the globe, in which the brain’s cerebral hemispheres are absent and replaced with sacs of cerebrospinal fluid. There is no known cause, no cure, and very little optimism available for...
...and you need a real life, maybe building up a piece of the world instead of tearing it down.
2 notes
·
View notes