Greetings! As the recently appointed CEO, I have the incredible privilege of helping the team advance our mission of funding research to find a cure and sharing information along the way. I look forward to keeping the community up-to-date on the latest research news, opportunities to learn, and unique CURE events while working diligently with our Chief Scientific Officer Dr. Laura Lubbers to drive epilepsy science forward.
I’m excited to highlight events, news, and community members in this update, and share more great news in the months to come. And if you’d like to learn a little more about me, head over to our website.
If you are in Boston, Chicago, or New York, please find information about several exciting events I hope to meet you at this year!
Read on to learn about:
- June 13: Webinar and Live Q&A on Epilepsy and Dietary Therapies: How What You Eat May Control Seizures
- TED Talk Discussing the Facts of Sudden Unexpected Death in Epilepsy (SUDEP)
- New Episodes: Seizing Life, a CURE Podcast
- The Broadway Sings for CURE Benefit Puts Epilepsy Center Stage
- CURE Champion Spotlight: Lacey Shirk Runs to Honor Her Best Friend’s Son
- Upcoming CURE Events
Beth Lewin Dean, CEO
June 13: Webinar and Live Q&A on Epilepsy and Dietary Therapies: How What You Eat May Control Seizures
For individuals with epilepsy – particularly if their seizures are not controlled by available medications alone – dietary therapies have the potential to help. Join us for a free webinar on these therapies Thursday, June 14 at 1:00PM CT.
The presenters Dr. Jong Rho from the University of Calgary and Dr. Eric Kosoff of Johns Hopkins will discuss the ketogenic diet and other evidence-based dietary options. These neurologists will examine the research supporting dietary epilepsy therapies as well as how patients and caregivers can work with their doctors to determine if these therapies are right for them.
This webinar is supported by the generosity of the BAND Foundation.
TED Talk Discusses the Facts of Sudden Unexpected Death in Epilepsy (SUDEP)
SUDEP is one of the most devastating potential consequences of epilepsy, but MIT Professor and Empatica Founder Rosalind Picard says artificial intelligence (AI) may help. Discover more information about SUDEP and how the epilepsy field is exploring AI as a way to save lives.
Spread awareness about SUDEP: share this video on Facebook and Twitter.
New Episodes: Seizing Life, a CURE Podcast
- Epilepsy and College: How to Survive and Thrive, with Eva and Michelle Wadzinski
- Epilepsy Summer Camp: Where Kids Can Be Kids, with Meg Busing
- Epilepsy…It’s Complicated, with Dr. Charles Marcuccilli
You can find Seizing Life on your favorite podcasting app or on our website, www.seizinglife.org.
CURE Champion Spotlight: Lacey Shirk Runs to Honor Her Best Friend’s Son
This month CURE Champion Lacey Shirk and a group of her close friends laced up their sneakers and ran through the streets of downtown Indianapolis for the 43rd annual OneAmerica Mini-Marathon. Together they raised nearly $2,700 to support CURE and our research efforts.
Lacey had a little extra inspiration and motivation for running this 13.1 mile race: her best friend’s son, 2-year-old Cohen who has epilepsy.
Cohen started having infantile spasms when he was 6 months old. His doctors discovered he had a stroke sometime around birth, leading to these spasms. Cohen has undergone intensive physical therapy 5 times a week and has made amazing progress on walking, standing, and using his left hand.
Lacey aims to help create a world without epilepsy for Cohen and the other 3.4 million people in the US affected by raising awareness and supporting innovative research.
CURE Boston Events
1:26 The Art of Epilepsy Art Exhibition
1:26 The Art of Epilepsy is an exhibition and cocktail reception honoring the work of Dr. Steven Schachter, Professor of Neurology at Harvard Medical School, and Dr. Kevin Staley, CURE Post-Traumatic Epilepsy Investigator and Chief of Pediatric Neurology at Massachusetts General Hospital.
The artwork tells unique stories about the seizure state, the psychosocial impact of living with epilepsy, and the medical technology involved in evaluating people affected by epilepsy.
Day of Science
On Saturday morning ask a panel of doctors and researchers your questions at CURE’s Day of Science. At this free event, panelists will address your questions on the latest research as it relates to new epilepsy treatment options, surgery, genetics, and more. After the panel, enjoy small-group discussions with the panelists over a provided lunch.
Day of Science is made possible thanks to the generous support of the BAND Foundation.
CURE Chicago Events
Ella’s Race is a 2.6 mile fun run and 1 mile walk featuring a silent auction for kids and adults alike. Refreshments will be served following the run/walk.
Chicago Half Marathon/5K
Join Team CURE and race toward a world without epilepsy at this Chicago Half Marathon/5K! When you join our team, you become a CURE Champion helping fundraise to support cutting-edge epilepsy research.
- Raise $250 and above to receive a Team CURE Race Hat.
- Raise $500 and above to receive a Team CURE Performance Race Shirt.
- Raise $1,000 and above to receive a Team CURE Performance Race Jacket.
- Raise $2,500 and above to receive free entry into the 2019 CURE Benefit.
To register, email Brandon Laughlin at events@localhost.
CURE New York Events
This event will be hosted by Miguel Cervantes, star of Chicago’s HAMILTON, who understands all too well how devastating epilepsy can be. His daughter, Adelaide, was diagnosed with a severe form of epilepsy called infantile spasms at 7 months old.
Stay tuned – we’ll announce the performers who will #SingForCURE soon.
New York City Marathon
Race to fund epilepsy research when you join Team CURE at the 2019 TCS New York City Marathon! Represent the 3.4 million Americans who are impacted by epilepsy at this iconic race through all 5 boroughs.
When you join Team CURE, you’ll receive:
- Free race entry ($295 value)
- Team CURE shirt
- Personal fundraising page
- Regular communications and motivational stories from CURE
- Private, post-race social event
Upcoming CURE Events
May 10: 1:26 The Art of Epilepsy Reception and Art Exhibition – Boston, MA
May 11: Day of Science – Boston, MA
May 19: CURE Jump-A-Thon – Chicago, IL
June 02: Ella’s Race – La Grange, IL
June 13: Epilepsy and Dietary Therapies Webinar – Online
June 24: Broadway Sings for CURE – New York, NY