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CURE Epilepsy Update: January 2022

January 6, 2022

Happy New Year CURE Epilepsy community!

On behalf of the entire team at CURE Epilepsy, I would like to extend a huge thank you to you, our generous supporters, who make our mission of funding research to find a cure for epilepsy possible.

 

 

 

Because of your unwavering support, engagement, and investment in CURE Epilepsy, we were able to award over $3 million in grants for epilepsy research in 2021. Your commitment allows us to fund critically needed epilepsy research and make strides that will advance care and lead to cures.

While 2022 is already presenting a familiar challenge with the Omicron variant, we are able to leverage the learnings and experience of the past year and a half to ensure that we can support the epilepsy research community and ensure that progress continues in this environment.

Whether it be in person or virtual, in 2022 you can look forward to all the amazing educational programming that you expect from us including a new series of webinars, CURE Epilepsy CARES events, Seizing Life® episodes, community events, updates on the latest research discoveries, and more.  And of course, we will continue to fund innovative and groundbreaking research as we advance our mission and search for cures to eliminate epilepsy.

Through research there is hope.

Cheers to a new year filled with health and happiness

In this CURE Epilepsy Update, please find information on:

CURE Epilepsy Champion Spotlight: Elissa Moore
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Elissa Moore, a CURE Epilepsy Champion from North Carolina, raises dollars for critical epilepsy research and awareness in honor of her son Cormac. Cormac was diagnosed at the age of 9 with an intractable genetic epilepsy which has led the Moore Family to explore many different medications and treatments in an effort to help him gain control of his frequent seizures.

As a Champion, Elissa converted her annual holiday card into a fundraiser for CURE Epilepsy. On her accompanying fundraising page, Elissa included a powerful message, “This year we celebrated one year of seizure freedom. It’s a success with footnotes, with caveats, with hesitation. Cormac’s tough exterior hides the challenges of living with a chronic health condition that could come roaring back without notice. His desire to be like everyone else, to blend in, to be the Cormac he once was, masks all that he battles. Desperate for further understanding and answers, we have chosen to direct this restless energy into a commitment to raise money for epilepsy research for a second year in a row. This year, however, the stakes are higher.”

You can become a Champion like Elissa by starting an awareness and fundraising event of your own to support CURE Epilepsy. For more information or if you need some ideas to get started, you can contact CURE Epilepsy at events@CUREepilepsy.org.

What’s New from the Seizing Life® Podcast
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Catch up on the latest episodes of our Seizing Life podcast, where you will hear:

  • Three of the many inspiring stories from our 2021 Seizing Life season: Elissa Moore, a mom whose son has had a challenging treatment journey, Lauren Panco, a woman who manages her epilepsy while balancing work and social demands, and Jon Sadler, who spoke about undergoing brain surgery after living with epilepsy for over 40 years. Watch now
  • Beth Dean, CURE Epilepsy CEO, Kari Rosbeck, TSC Alliance President and CEO, Dr. Renee Shellhaas, Pediatric Neurologist and Director of Research at CS Mott Children’s Hospital at the University of Michigan, and Kelly Cervantes discuss the latest in infantile spasms research and clinical trials, and what you should do if you think your baby may have infantile spasms. Watch now.

Stay tuned to upcoming Seizing Life episodes on the following topics:

  • Genetic testing and counseling – what are the potential benefits of genetic testing for people living with epilepsy.
  • Living with epilepsy in Tanzania, Africa – in honor of International Epilepsy Day (February 14, 2022) we will be sharing an episode on the challenges of living with epilepsy in Tanzania, Africa.
  • Post-traumatic epilepsy (PTE) – what are some of the potential cognitive challenges and some strategies to improve the quality of life for those living with PTE and their caregivers.
  • The challenges of raising a child with a complex medical condition such as epilepsy in a rural environment.

Watch these and all our upcoming Seizing Life episodes here

Please mark your calendar for some key dates in the epilepsy community:

  • February 14 – International Epilepsy Day
  • February 28 – Rare Disease Day
  • March 26 – Purple Day®
  • May 15 – TSC Global Awareness Day
  • June 23 – International Dravet Syndrome Awareness Day
  • October 23 – SUDEP Action Day
  • November 1 – International LGS Awareness Day
  • November – Epilepsy Awareness Month
  • December 1-7 – Infantile Spasms Awareness Week