Greetings Epilepsy Community,
February has arrived, and as we approach International Epilepsy Day and Valentine’s Day next week, I think of the incredible love and support that exists in the epilepsy community across the world. Each of you plays a vital role in our mission as you help to inspire us and deepen our drive to find a cure. Without you, our work would not be possible, and we would be that much further from a cure for epilepsy.
February is also Black History Month. This month, CURE Epilepsy is highlighting some of the many Black individuals who are making a meaningful impact within the epilepsy community. We started this week by spotlighting Sherri Brady, whose daughter, Lauren, was diagnosed with Rett syndrome as a young child and who has now blossomed into a wonderful young woman. Sherri has dedicated her life to not only taking care of Lauren, but also helping and advocating for others within the Rett syndrome and epilepsy communities. Click here to read Sherri’s remarkable story and stay tuned to our social channels to see who we spotlight next.
Lastly, as we look back at what CURE Epilepsy has accomplished over the past 25 years, we are also looking forward. As we map out our plan for the future, it is essential that we understand what is important to people with epilepsy, parents and caregivers, researchers, and everyone else who engages with the community. In the coming weeks, you will see an email invitation to participate in a short survey. I would be incredibly grateful if you could take 15 minutes out of your day and share your thoughts with us.
In this CURE Epilepsy Update, please find information on:
- $6,500 for the 65 Million for International Epilepsy Day
- Spread Love and Epilepsy Awareness This Valentine’s Day
- Upcoming Webinar: Cutting-Edge Technologies for Treating Ultra-Rare Epilepsies
- Champions Challenge: $425 for 25
- 25th Anniversary Special Edition: CURE Epilepsy Discovery: Funding Basic Mechanisms Research Drives Momentum Toward a CURE
- Charity Matters Podcast Featuring CURE Epilepsy Founder, Susan Axelrod
- What’s New from the Seizing Life® Podcast
- The CURE Epilepsy Store
- Key Dates on the Epilepsy Community Calendar
$6,500 for the 65 Million for International Epilepsy Day
International Epilepsy Day is right around the corner, and we need your help! CURE Epilepsy is working to raise $6,500 to fund research for the 65 million people worldwide who need a cure for epilepsy. Donate today and make a difference in the lives of those desperate for a cure.
Spread Love and Epilepsy Awareness this Valentine’s Day
This Valentine’s Day we are asking all caregivers and those who love an American with epilepsy to share a picture of themselves with a purple heart (since purple is the color of epilepsy awareness!) on social media with the caption “Someone I love is 1 in 26” to raise awareness that 1 in 26 Americans will develop epilepsy in their lifetime. Create your own heart at home, print out a purple heart from our website, or color one of the heart coloring pages available on our website! Be sure to tag us and use #SayEpilepsy when you post your picture!
Upcoming Webinar: Cutting-Edge Technologies for Treating Ultra-Rare Epilepsies
Save the date for our upcoming webinar, Cutting-Edge Technologies for Treating Ultra-Rare Epilepsies, which will take place Thursday, February 23 at 2 pm CT.
Champions Challenge: $425K for 25
For 25 years, CURE Epilepsy Champions from around the US and beyond have rallied their professional networks, local businesses, friends, and families to give in support of our mission. While we are proud to celebrate our accomplishments, we have much left to do! This year we call on all our Champions, new and long-standing, to participate in the 25th Anniversary Champion’s Challenge. All it takes is a fun idea to help raise awareness and encourage donations. Just as you set your fundraising goal, we will set ours. In celebration of 25 years, we hope to break the record of most Champion funds ever raised—$425,000 among all champions.
Your efforts are key in unlocking the CURE Epilepsy Champion’s Chest. Every Champion host who helps unlock this chest will unlock a raffle ticket to win a trip to Epilepsy Awareness Day at Disneyland for a family of four in 2024. Every fundraiser who raises over $1,000 will also receive additional CURE Epilepsy treasures from the chest.
25th Anniversary Special Edition: CURE Epilepsy Discovery: Funding Basic Mechanisms Research Drives Momentum Toward a CURE
Basic research provides hope for a cure for the epilepsies; by better understanding the mechanisms that cause seizures, we can develop curative treatments for the epilepsies. For 25 years, CURE Epilepsy has been funding breakthrough research, including the research of John Swann on Infantile Spasms, to advance science to find a cure for epilepsy.
Charity Matters Podcast Featuring CURE Epilepsy Founder, Susan Axelrod
CURE Epilepsy Founder, Susan Axelrod, speaks with Charity Matters podcast host, Heidi Johnson, about her journey of raising a child with epilepsy and searching for a cure.
Apply for the 2023 Global Genes RARE Compassion Program
Individuals and families can now apply to be chosen to help educate the next generation of healthcare providers about undiagnosed and rare diseases. The 2023 Global Genes RARE Compassion Program will run from April-November 2023.
What’s New from the Seizing Life® Podcast
After Decades of Seizures, an Epilepsy Diagnosis Begins to Provide Answers
Years after recovering from meningitis as an infant, Ara began experiencing seizures as a teenager. Despite visiting numerous neurologists and trying various medications, Ara continued to experience seizures for decades.
Recent Advances in Diagnostic and Surgical Tools for Epilepsy
Recorded live at Epilepsy Awareness Day at Disneyland this past November, we take a look at diagnostic and surgical tools that assist physicians in localizing and removing areas of the brain that produce seizures.
Unleashing Your Inner Mamma Bear
Recorded live at Epilepsy Awareness Day at Disneyland this past November, epilepsy advocate and mother Kate Neale Cooper and podcast host and mother Kelly Cervantes share their experiences parenting children with epilepsy and offer advice on advocating for your child’s epilepsy care.
Watch these and all of our upcoming Seizing Life episodes here.
The CURE Epilepsy Store
Need apparel or accessories to raise epilepsy awareness? Check out the CURE Epilepsy Store!
Please mark your calendar for the following key dates in the epilepsy community:
- January 1 – December 31, 2023 – CURE Epilepsy’s 25th Anniversary
- February 13 – International Epilepsy Day
- March 25 – Purple Day Expo at Disney World
- March 26 – Purple Day
- October 18 – SUDEP Action Day
- October 31- November 1 – Epilepsy Awareness Day at Disneyland
- November – Epilepsy Awareness Month
- December 1-7 – Infantile Spasms Awareness Week
1 in 26 individuals will be impacted by epilepsy in their lifetime.
Each person has their own story.