livingwellwithepilepsy

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Why was the June Epilepsy Blog Relay Delayed Until July?

Why was the June Epilepsy Blog Relay Delayed Until July?

Chose this photo because I’m starting to feel like I did something wrong in a past life! June/July Epilepsy Blog Relay What happened to the June Epilepsy Blog Relay you ask? Well, I have discovered that when you have a parent with advanced Alzheimer’s Disease; another parent with advanced COPD, heart disease, diabetes and recovering from sepsis; and a child who was in a severe accident which…

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In gratitude for my epilepsy

In gratitude for my epilepsy

I don’t usually write blog posts for the Epilepsy Blog Relay because I feel it is an opportunity for the community to share their stories but so much has happened in my little world (not all great) and I wanted to share a little about my perspective on gratitude. Gratitude for my epilepsy My daughter was recently in the hospital following a very serious accident. She needed several surgeries and…

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Virtual Epilepsy Education Conference to Celebrate Purple Day

Virtual Epilepsy Education Conference to Celebrate Purple Day

Purple Day Each year, The Anita Kaufmann Foundation and the Epilepsy Association host the Purple Day® Around the World Epilepsy Education Conference with the hope of de-stigmatizing epilepsy by educating the public. The last three years, the conference has been held at Disney World®. This year, due to the worldwide pandemic, this FREE conference is being held virtually, giving the opportunity for…

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Absence Seizures Won't Keep Andrea from Becoming a Full-Time Musician

Absence Seizures Won’t Keep Andrea from Becoming a Full-Time Musician

Andrea is living with absence seizures but that doesn’t stop her from performing beautiful music with her band Motion Device. In fact, the group has recently released a beautiful piano cover of Boston’s “More Than A Feeling.” Andrea’s story Andrea has learned to cope with epilepsy and not let it get in the way of her aspirations to be a full-time musician. When people see Andrea in a Youtube…

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Managing Epilepsy When You're in the Middle Place

Managing Epilepsy When You’re in the Middle Place

I had not planned to run my own post during this epilepsy blog relay. But that’s the thing about the stories we receive at Living Well With Epilepsy, they are surprising and inspiring. Lauren’s Fake It Til You Make It story resonated so much with me that I wanted, no, I needed to take a moment to get a little real about what life is like for me trying to manage epilepsy while also being in what…

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COVID-19 Vaccine and Epilepsy

COVID-19 Vaccine and Epilepsy

A COVID-19 Vaccine The United Kingdom has become the first country to approve and authorize delivery of a COVID-19 mRNA vaccine, developed by Pfizer and partner BioNTech. The companies have signed an agreement to supply 40 million doses to the UK. This is an exciting scientific achievement and will help the global community in fighting the global pandemic. Living Well With Epilepsy readers are…

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Make the most of your next doctor's visit with the STEPS discussion tool

Make the most of your next doctor’s visit with the STEPS discussion tool

Seize the Truth about Epilepsy Perceptions

The “Seize the Truth About Epilepsy Perceptions” (STEP) Survey, was developed by SK Life Science, Inc. to understand the current state of epilepsy in the United States and to foster better communication between patients and their care teams. According to WebMD, results from the Seize the Truth About Epilepsy Perceptions (STEP) Survey revealed eye-opening…

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World Health Assembly calls for global action plan on epilepsy

World Health Assembly calls for global action plan on epilepsy

While we were busy developing sourdough starters, establishing victory gardens, cancelling vacation plans and generally going stir crazy, the World Health Assembly gathered and took a moment to address the global impact epilepsy is having on the health of people around the world.

WHA73

At the 73th Session of the World Health Assembly, Member States endorsed a resolution calling for scaled-up…

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Three opportunities for researchers interested in developing neurotherapeutics

Are you interested in developing Neurotherapeutics? Do you want an opportunity to network with leading experts in academia, industry, advocacy, and government? Do you just want to know more about the current state of therapeutics in several neurological disease areas? Here are several opportunities to take your career to the next level:

 1. Training in Neurotherapeutics Discovery and Development…

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Important Topics to Discuss at Your Next Medical Appointment

Important Topics to Discuss at Your Next Medical Appointment

This blog post was submitted by SK Life Science, Inc., the lead sponsor of the November 2020 Epilepsy Blog Relay.

As many of you are aware, even today, people living with epilepsy can face stigma and discrimination due to their seizures, and many feel their seizures have a negative impact on overall quality of life. 2

Productive and honest discussions about epilepsy have become…

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My COVID-19 Victory Garden has become my best stress relief

My COVID-19 Victory Garden has become my best stress relief

Some of you may be aware that I’ve become a little obsessed with gardening this year. So I figured since I just had my birthday I should celebrate by writing about whatever I want… Okay well, maybe at 48 I should get over myself. But I do want to share a little about my garden adventures.

The birthday bit

Before I move on, yes I did have a birthday recently. Yes, my hair is actually going gray.…

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Epilepsy Heroes: Cole and Katie

Epilepsy Heroes: Cole and Katie

This blog post was submitted by Sunovion Pharmaceuticals Inc.

#MyEpilepsyHero is proud to feature Cole and Katie, two amazing kids who started their own initiatives to help fellow kids with epilepsy.

This #MyEpilepsyHero post is published with the permission of Cole and Katie.

Cole:

During a prolonged stay at a children’s hospital for his epilepsy, 12-year-old Cole was introduced to the idea…

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Participate in the November 2020 Epilepsy Blog Relay

Living Well With Epilepsy is gearing up for our next Epilepsy Blog Relay™ which will run throughout November 2020.

HOW IT WORKS

There are a few ways to participate: 1) BLOGGER: If you have your own blog – Participate as a blogger by posting the full story on your site and on Living Well With Epilepsy. FREE

2) CONTRIBUTOR:If you don’t have your own blog – Participate as a blogger by…

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Transition of Care: Transitioning Adolescent Epilepsy Patients

Transition of Care: Transitioning Adolescent Epilepsy Patients

This blog post was submitted by Sunovion Pharmaceuticals Inc. Dr. Nassim Zecavati is a paid consultant of Sunovion Pharmaceuticals Inc. Certain organizations are mentioned in this post; this does not constitute an endorsement by Sunovion of these organizations.

Meet Nassim Zecavati, MD, MPH

Transition of care is a stressful time, but it doesn’t have to be. As a board-certified pediatric…

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Amazon to acquire PillPack: The right medications at the right time

Amazon to acquire PillPack: The right medications at the right time

At Living Well With Epilepsy we have been fans of PillPack since 2014 when we had the opportunity to interview TJ Parker, CEO and Co-Founder of PillPack on our very first LIVINGWELLCHAT. If you haven’t heard of this company yet, check out Dan Gorenstein’s story on Marketplace (one of my favs).

PillPackis a pharmacy that makes it simple to take the right medications at the right time. As someone…

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Live with Craig Chambliss discussing the importance of rescue medications

Craig Chambliss

Meet Craig Chambliss, CEO and Co-Founder of Neurelis, Inc. It has been a big year in rescue medications thanks to decades of work by Chambliss and his team. In January 2020 Neurelis learned their product, VALTOCO, a diazepam nasal spray, was approved by the FDA, and in March of 2020 they announced it was commercially available.

  Craig will join me today, April 15, at 3pm ET as my…

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Live with Torie Robinson

Torie Robinson

Meet Torie Robinson, she is the founder of Epilepsy Sparks an organization based in the UK and an international speaker on the topic of epilepsy. Torie will join me today, April 7, as my guest on Instagram Live. We will chat about raising awareness by sharing stories.

  Torie is a great resource not just to those in the UK but to anyone with epilepsy around the world. She is…