CURE has been active on Capitol Hill advocating for epilepsy research and I recently participated in several media interviews about the FDA approval of a new epilepsy drug. But in this month’s update, I’ll primarily focus on how you can advance epilepsy research by becoming a CURE Champion.
When you host a CURE Champion event, you bring your community together to increase awareness about epilepsy and the critical need for a cure. Whether a dance class, art exhibition, 5K run, or meet-up, your CURE Champion event can make a real difference in the quest for a cure.
Our CURE Champions are parents like the Cunneens, friends of families dealing with epilepsy like Arielle Singer, inspiring children like Belle Leal, and committed professionals like Dr. Julie Thompson-Dobkin. This month, take a moment to learn more about our CURE Champions and consider becoming one.
CURE Champion Spotlight: How the Cunneen Family Raised Over $100,000 for Epilepsy Research
Blake and Shalee Cunneen, along with their children Ella and Sean, have been CURE Champions for three years. The Cunneens host Ella’s Race in La Grange, IL, which has raised nearly $100,000 and brought over 500 people together to support CURE and help combat epilepsy.
Blake and Shalee became CURE Champions for their daughter, Ella, who was first diagnosed with epilepsy just days after her first birthday. Ella is 8 years old now and has endured countless prolonged hospital stays and the side effects of 18 different medications. Unfortunately, Ella continues to have seizures.
Due to her frequent seizures, Ella’s development has been significantly slowed, but her indelible spirit remains untouched. She continues to attack each new challenge she faces with a smile.
“Finding a new and novel treatment and changing technology is currently our only hope for Ella to become seizure-free. CURE is constantly at the forefront of the epilepsy research community, and they are also very fiscally responsible with all the contributions they receive. We are proud to be volunteers for CURE, and Blake is also a Board Member for the organization. We are very passionate about this cause and believe CURE is the best agency out there to help us and Ella.” – Shalee Cunneen
Learn More About Ella and Become a CURE Champion
Next Week: Free Webinar on Epilepsy, Memory, and Aging
Join us for a free webinar discussing Epilepsy’s Impact on Memory and Cognition Over Time on Monday, July 9, at 1:00PM CT. During this webinar, you’ll learn about therapies that can help prevent memory loss and cognitive decline in people with chronic epilepsy, as well as what factors contribute to healthy cognitive and brain aging.
The webinar will be presented by Dr. Bruce Hermann, an expert in brain and cognitive aging. During a Q&A session with Dr. Hermann, you can ask questions such as:
- Can any measures be taken to combat the cognitive decline that accompanies getting older with epilepsy?
- Why is memory loss and cognitive decline associated with epilepsy?
- Are certain individuals with epilepsy more likely to experience cognitive decline as they age than others?
Epilepsy Advocacy on Capitol Hill
CURE headed to Capitol Hill to advocate for federal research funding for Sudden Unexpected Death in Epilepsy (SUDEP). The risk of sudden death is over 20 times higher for people with epilepsy than for the general population, and understanding SUDEP’s causes and mechanisms is critical to preventing it.
Our Associate Director of Research, Dr. Lauren Harte-Hargrove, visited congressional offices with representatives from the Danny Did Foundation and the Dup15q Alliance. They went to the offices of Illinois Senator Dick Durbin and Representatives Mike Quigley, Brad Schneider, Jan Schakowsky, and Bill Foster.
Federal funding for SUDEP research programs is imperative for preventing SUDEP. Advocacy from organizations like CURE and from the epilepsy community plays a pivotal role in the fight for funding.
Save the Date: 20th Annual Chicago Benefit on October 15, 2018
We are celebrating 20 years of CURE’s impact and emerging discoveries at the 20th Annual Chicago Benefit on October 15, 2018 at Navy Pier. This event will feature a reception, dinner, and music performance from a very special guest. Stay tuned to find out who the surprise performer is!
Interested in sponsorship and underwriting opportunities? Please contact Mia Beans at Mia.Beans@CUREepilepsy.org or 312-626-1798.
Start a Facebook Fundraiser to Support Epilepsy Research
Looking for a great way to get your friends involved in helping to find a cure for epilepsy? Host a CURE fundraiser on Facebook!
You and your Facebook friends can make an impact by helping CURE fund cutting-edge epilepsy research. More than 800 people have donated to CURE through Facebook fundraisers this year, and you can join them today!
Facebook covers all credit card processing fees, so 100% of your friends’ donations come to CURE.
Start Your Fundraiser and Like Us on Facebook
Webinar: Epilepsy’s Impact on Memory and Cognition Over Time – July 9
Pies and Pints to Benefit CURE, hosted by Kelly and Miguel Cervantes – July 29
The Hidden Truth Project’s 7th Annual 1:26 The Art of Epilepsy in Irvine – September 29
The Hidden Truth Project’s 7th Annual 1:26 The Art of Epilepsy in Chicago – October 14