CURE Epilepsy Update August 2022
August 4, 2022
Greetings Epilepsy Community,
Though it is hard to believe, it is almost time for kids to return to school. If you are a student with epilepsy, or the caregiver of a student with epilepsy, the start of the school year can bring with it a mixture of excitement and anxiety. To help ease any anxiety, we encourage you to consider creating an IEP (Individualized Education Plan) or reviewing your existing IEP, preparing a Seizure Action Plan that can be shared with your school, and coordinating the availability of any prescription rescue medications with your school district, school nurse, and/or teacher
At CURE Epilepsy, we have heard that students with epilepsy are treated unfairly, told seizures aren’t an excuse for unfinished homework, or are even told they are faking seizures to get attention. The better-informed everyone associated with our children’s education can be about epilepsy, the greater the chances are that we will eliminate the stigma often associated with epilepsy, improve children’s school experience, and keep them safe.
While teachers and IEPs can support and champion students with epilepsy during the school day, there is another hero we need to recognize in the epilepsy community this month who helps day in and day out. This month is Seizure Dog Awareness Month, and we will be highlighting seizure dogs, how they do what they do, and their impact on their owners who have epilepsy on an upcoming Seizing Life® episode, so stay tuned!
Through research there is hope.
In this CURE Epilepsy Update, please find information on:
- Unite to CURE Epilepsy 2022
- CURE Epilepsy Discovery: Identifying a Promising Novel Treatment for Infantile Spasms
- Prep for Back to School with IEPs
- Now on TikTok
- CURE Epilepsy Champion Highlight
- What’s New from the Seizing Life® Podcast
- The CURE Epilepsy Store
- Key Dates on the Epilepsy Community Calendar
Unite to CURE Epilepsy
Our Unite to CURE Epilepsy virtual event is back! Join us as we celebrate advances in epilepsy research, inspiring stories from the community, and so much more. Our 3rd annual Unite to CURE Epilepsy event will premiere on September 29th at 7 pm ET/3 pm PT hosted by Chicago ABC7’s Tanja Babich. We look forward to connecting with everyone within the epilepsy community across the country. And stay tuned for more news about how this year’s event will be even more engaging!
CURE Epilepsy Discovery: Identifying a Promising Novel Treatment for Infantile Spasms
This latest Discovery covers developments on a promising treatment for infantile spasms (IS). Leveraging findings from his work as part of the CURE Epilepsy Infantile Spasms Initiative (2013-2017) and with additional funding from the National Institutes of Health, Dr. John Swann and his team used a previously developed rat model of IS that mirrors many of this disorder’s symptoms to investigate spasms that result from pediatric brain injuries, such as those suffered during a traumatic birth. Standard treatments for IS work in only approximately 50% of patients and can have severe side effects. The need for additional effective therapies drove Dr. Swann and his team to explore a more effective treatment with fewer or, ideally, no side effects.
Prep for Back to School with IEPs
IEPs (Individualized Education Plans) are developed by teams of parents, school administrators, medical professionals, and child advocates in public schools for children who need accommodation. The IEP is a written legal document that maps out the program and special education instructions, supports, and services that will help children thrive and progress in school. Learn about the IEP development process, the different accommodations you can request, and how to advocate for your child’s education.
Now on TikTok
The wait is over! CURE Epilepsy is now bringing epilepsy education to TikTok. Follow along to learn more about epilepsy and help spread the word.
CURE Epilepsy Champion Highlight
We are fortunate to have so many amazing CURE Epilepsy Champions working with us to fund research to find a cure. Each champion brings their own unique style to their event whether it be a run/walk, a lemonade stand, or an event full of art and music. Check out what some of our CURE Epilepsy Champions have done and maybe even get ideas on what you would do as a CURE Epilepsy Champion.
What’s New from the Seizing Life® Podcast
Inflammation’s Role in Epilepsy and How It Might be Prevented
In this episode, epilepsy researcher Dr. Nicholas Varvel discusses the connection between acquired epilepsy and inflammation in the brain.
Growing Up with Epilepsy Leads to Making Movies About It
Listen as filmmaker Miles Levin discusses growing up with epilepsy and turning his experiences into the award-winning short film “Under the Lights”.
Watch these and all of our upcoming Seizing Life episodes here.
The CURE Epilepsy Store
Shop the CURE Epilepsy Store and help spread awareness with our CURE Epilepsy merchandise including apparel, car magnets, water bottles, and more.
Please mark your calendar for the following key dates in the epilepsy community:
- August 1-31 – Seizure Dog Awareness Month
- October 19 – SUDEP Action Day
- November 1 – International LGS (Lennox-Gastaut Syndrome) Awareness Day
- November 1-30 – 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.
