Greetings CURE Epilepsy community,
This month I want to highlight the importance of community advocacy in helping pass important state and federal legislation that will benefit people with epilepsy. Recently Congress introduced The Research Investment to Spark the Economy (RISE) Act. The bill’s purpose is to authorize supplemental funding to mitigate the negative effects of the COVID-19-related laboratory closures and disruptions on research already in progress. The bill would authorize $25 billion in funding and includes $10 billion for the National Institutes of Health (NIH) to address the massive setbacks in life-saving research that occurred because of pandemic. Find out how you can add your voice to revive work on a cure for epilepsy.
Other key places that CURE Epilepsy is making sure its voice, and the voice of the epilepsy community, are heard include:
- Joining a coalition of 69 epilepsy advocacy groups, healthcare providers, and biotech companies asking U.S. governors to prioritize people with rare diseases, including rare epilepsies, and their caregivers for COVID-19 vaccine distribution.
- Signing on to a letter from the CDC Coalition to U.S. lawmakers asking them to provide at least $10 billion for Centers for Disease Control (CDC) programs, including the CDC Epilepsy program.
- Signing on to a coalition letter advocating support for $3.75 billion in FY 2022 for the CDC’s National Center for Chronic Disease Prevention and Health Promotion, where the CDC Epilepsy program is housed.
In this CURE Epilepsy update, please also find information on:
- CURE Epilepsy’s participation in Purple Day 2021 (March 26)
- Get Involved! Run for Research, Chicago Marathon team, and other CURE Epilepsy Champion events
- Webinar (March 22): Women’s Health: Complex Interactions of Epilepsy, Medications, and Hormones
- Education Enrichment Fund Applications Due April 15
- What’s New from the Seizing Life® podcast
As always, thank you for continuing to support research toward a cure for epilepsy.
Beth Lewin Dean, CEO
CURE Epilepsy participates in Purple Day, March 26
Purple Day (March 26) is a yearly effort to raise awareness about epilepsy worldwide. This year, CURE Epilepsy will be participating in the Purple Day® Around the World 2021 Virtual Epilepsy Education Conference. Dr. Scott Perry, Medical Director of Neurology at Cook Children’s in Texas, and Hillary Savoie–writer, writer, rare disease advocate, and a mother of a determined little girl named Esme–will be discussing patient participation in epilepsy clinical trials as part of the Purple Day conference taking place March 24-25. You can watch our video and other interesting content by registering for the conference here.
Get Involved! Run for Research, Bank of America Marathon, and other CURE Epilepsy Champion events
Looking for a fun way to run and raise money to help find a cure for epilepsy? Join CURE Epilepsy’s virtual Run for Research from April 26 to May 2. Run 26.2 miles over the course of a one-week period for the 1 in 26 Americans living with epilepsy. Until we can run together in the fall, CURE Epilepsy Champions of all fitness levels will run independently to raise funds to find a cure.
Looking to run a marathon this October? CURE Epilepsy has secured 5 charity spots in the Bank of America Chicago Marathon being run on Sunday, October 10. Find out more about how you can join Team CURE Epilepsy.
Looking for a way to help spread awareness of the importance of epilepsy research and help fundraise at the same time? Become a CURE Epilepsy Champion. Learn more!
Webinar (March 22): Women’s Health: Complex Interactions of Epilepsy, Medications, and Hormones
In honor of Women’s History Month, join us Monday, March 22 at 12pm CT for a free webinar on women’s health and epilepsy. In this webinar, Dr. Page B. Pennell will discuss how epilepsy and anti-seizure medications can affect hormones and reproductive health, how sex steroid hormones can affect anti-seizure medications and seizure control, and how the menopausal transition can affect epilepsy.
Apply for an Epilepsy Enrichment Fund scholarship. Applications due April 15, 2021
The deadline to submit your application for the Education Enrichment fund is approaching! Made possible by Greenwich Biosciences, this is a one-time scholarship of up to $5,000 for those living with epilepsy, family members, or caregivers to help them become an agent of change in the epilepsy community.
New from Seizing Life, a CURE Epilepsy Podcast
Catch up on the latest episodes of our Seizing Life podcast. Listen as we share:
- The Best of 2020, a small sample of the stories and guests who provided us valuable information and hope during 2020. Watch or listen
- The story of a newly diagnosed epilepsy patient navigating her new reality, and how she approaches her new life with epilepsy. She offers advice for fellow patients, and encourages those who can to advocate for themselves. Watch or listen
Do you have a story you want to tell about how epilepsy has impacted your life, your family, or your community? Please share your epilepsy truth on our website.