Greetings Epilepsy Community,
I am excited to announce the 2022 research grantees for our Catalyst, Rare Epilepsy Partnership, and CURE Epilepsy awards in this month’s CURE Epilepsy Update. The selection of cutting-edge research projects is one of the most important charges of our organization. We are proud to announce seven additional grants, which support many areas of epilepsy research, from the natural history and genetics of rare SCN8A-related disorders to translational research on a drug that can treat refractory neonatal seizures. The three Catalyst, three Rare Epilepsy Partnership, and one additional CURE Epilepsy Award total $1.3 million in funding and bring our total funding to almost $2.5 million in the past 12 months.
Five of our latest grants are generously funded by an anonymous donor who is inspired by the life of Robert Withrow Wier, who was an ambitious community leader with an innovative mind and a generous heart. This philanthropy has been particularly instrumental in two of our newest grant mechanisms, the Catalyst and Rare Epilepsy Partnership awards. The Robert Withrow Wier Fund jumpstarted the first Catalyst Award in 2020 and, through a unique matching gift challenge, inspired both additional large and small gifts to propel this program forward. Additionally, the CURE Epilepsy contributions of all three 2022 inaugural Rare Epilepsy Partnership Awards, which allow for accelerated progress on research priorities in collaboration with smaller nonprofits focused on rare epilepsies, are sponsored by the Fund.
Learn more about our new grantees here and stay tuned for updates on research progress going forward.
CURE Epilepsy (and epilepsy research) wouldn’t be where it is today if it wasn’t for our donors who have helped to fund these critical grants. We are also indebted to all of our amazing volunteers who give their time and talents to help support our mission. In advance of Volunteer Appreciation Week this month, let me personally thank everyone in the community who has helped us during the past year. It takes a village to come together to help propel epilepsy research forward the way that we have, and I am grateful to each and every one of you!
With a commitment to inspire hope and deliver impact.
In this CURE Epilepsy Update, please find information on:
- Tickets Available for Our 25th Anniversary Gala in Chicago
- CURE Epilepsy Discovery: CURE Epilepsy Grantee Discovers Specific Alterations in the Inhibitory Neurotransmitter System in Infantile Spasms (IS)
- Register for Our Online Forum: Navigating Prescription Medicine Access and Patient Support Programs
- Save the Date for Our Newest Treatment Talk: Treatment of Focal Epilepsy: Advancement Toward Medical Remission
- Watch Our Webinar: The Role of Medicinal Cannabis and Cannabidiol in the Treatment of Epilepsy
- Siblings Day on April 10
- What’s New from the Seizing Life® Podcast
- The CURE Epilepsy Store
- Key Dates on the Epilepsy Community Calendar
Tickets Available for Our 25th Anniversary Gala in Chicago
Get your tickets today for our 25th Anniversary Gala in Chicago to be held on Saturday, May 6 at the Sheraton Grand Chicago Riverwalk. Join us in celebrating 25 years of inspiring hope and delivering impact and help us raise money to continue funding innovative epilepsy research.
CURE Epilepsy Discovery: CURE Epilepsy Grantee Discovers Specific Alterations in the Inhibitory Neurotransmitter System in Infantile Spasms (IS)
One of CURE Epilepsy’s Infantile Spasms (IS) Initiative’s grantees, Dr. Chris Dulla, developed a mouse model that simulates the neuronal excitation and inhibition relevant to IS. Animal models are incredibly useful to understanding the biological mechanisms underlying IS, and by better understanding the interplay between neural excitation and inhibition in IS, there is hope that we can develop targeted therapies.
Register for Our Online Forum: Navigating Prescription Medication Access and Patient Support Programs
Navigating access to prescription medications and overcoming the financial barriers can be incredibly complex and frustrating. Join us for an informative virtual forum about the challenges to accessing prescription medications and cost-saving strategies.
Save the Date for Our Newest Treatment Talk: Treatment of Focal Epilepsy: Advancement Toward Medical Remission
Join CURE Epilepsy for our next Treatment Talk, a social-media broadcast that will be released Thursday, April 27 at 12pm CT on CURE Epilepsy’s YouTube channel. This talk will discuss focal epilepsy and the most recent treatments to help patients achieve medical remission. The talk features Dr. Michael Smith, Senior Attending Neurologist and Director of the Rush Epilepsy Center in Chicago and Sarah Carlson, a patient of Dr. Smith’s who battled epilepsy and its corresponding stigma for many years before achieving seizure freedom. Viewers will learn about focal epilepsy, how a new treatment (cenobamate), can offer patients the hope of medical remission, and the benefits and risks identified in recent clinical trials of cenobamate.
This talk is made possible through the generous support of SK Life Science.
Check Our YouTube Thursday, April 27 at 12pm CT
Watch Our Webinar: The Role of Medicinal Cannabis and Cannabidiol in the Treatment of Epilepsy
Did you miss our March webinar, The Role of Medicinal Cannabis and Cannabidiol in the Treatment of Epilepsy? Don’t worry, you can watch the recording or read the transcript on our website! This webinar reviews the basics of cannabis biology and the differences between cannabis strains, as well as explain the medical uses of medical marijuana and the recent approval of CBD to treat specific types of epilepsy. Thank you to Jazz Pharmaceuticals for their generous support of this webinar.
Siblings Day on April 10
Yesterday was Siblings Day, a day to recognize the amazing bond between siblings. When a child has epilepsy, it affects the entire family including the child’s siblings. Visit our Siblings Day event page to see Seizing Life episodes with siblings of individuals with epilepsy (including CURE Epilepsy Board Members Marilynn Gardner and Michael Axelrod) and a webinar on the impact seizures can have on the entire family.
What’s New from the Seizing Life® Podcast
From Desperation to Hope: The Founding and Future of CURE Epilepsy featuring Susan Axelrod and Barbara Kelly
In 1998, Citizens United for Research in Epilepsy (CURE; the organization now known as CURE Epilepsy) was founded by parents of children with epilepsy who could no longer live with the status quo of epilepsy care. Desperate to help not only their own children, but also to create a better future for others living with epilepsy, these early advocates for epilepsy research changed the focus from “living well” with epilepsy to actively finding a cure for it. Susan Axelrod and Barbara Kelly were both there in the early years of CURE, gathering around a kitchen table to sow the seeds for the fledgling organization.
As CURE Epilepsy celebrates its 25th anniversary, Susan and Barbara join us to discuss the early years of CURE, their initial inspiration and vision for the organization, its impact on epilepsy research, and their hopes for the future of epilepsy treatments and cures.
The Crucial Role of Nurses in Epilepsy Care
Lucretia Long, an Advanced Practice Registered Nurse (APRN) and a Certified Nurse Practitioner (CNP), explains the training, duties, and responsibilities of an Advanced Practice Provider and discusses the vital role they play in filling gaps within epilepsy care caused by factors such as physician time limitations and the decline in medical school applicants.
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
- 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.