This webinar recorded at Columbia University in New York City, focuses on “Genetic Testing to Develop Personalized Medicine in Epilepsy”. In this webinar, learn more about the importance of genetic testing in epilepsy, the different diagnoses you can receive from genetic testing, and what options are available after your testing results. Also, learn how CURE’s Signature Program, the Epilepsy Genetics Initiative or EGI, is helping push the precision medicine movement in epilepsy forward.
The webinar is presented by Dr. David Goldstein, Director of the Institute of Genomic Medicine at Columbia, and also features a Q&A portion. Some of the questions you might hear addressed include:
What is the value of genetic testing?
How do I go about getting testing ordered for me and/or my child?
What type of results can I expect if I do have genetic testing completed?
How can knowing the cause of my/my child’s epilepsy help with the available treatment options?
How is epilepsy research, like that involved in EGI, helping end the diagnostic odyssey that many patients face?
Despite being one of the most lauded musical stage actors in the area right now, Miguel Cervantes, who plays the title role in Chicago’s production of “Hamilton,” remains humbled by the outpouring of support for his 1-year-old daughter.
And on July 10, Cervantes will be at the Wynstone Golf Club in North Barrington rallying additional support for his daughter, Adelaide, who was diagnosed with infantile spasms, according to the group Citizens United for Research in Epilepsy (Cure).
“It”s amazing to hear from people all over the world,” Cervantes said. “People are reaching out.”
At 10 a.m. July 10 at the golf course, Cervantes will start a day-long fundraiser for Cure and try to turn the spotlight on his daughter’s diagnosis.
Cervantes said epilepsy typically does not receive the same media coverage as other diseases, such as Parkinson’s, Alzheimer’s and ALS.
“So, people thank me for putting epilepsy on the map,” he said. “If my small piece of fame can help, then I’m happy to use it.”
Cervantes said his wife, Kelly, worked in event sales and also helped host events for epilepsy research in New York City before “Hamilton” came to Chicago last fall.
Their daughter has experienced ups and downs since her diagnosis, which is typical in the “the world of epilepsy,” he said.
“This is the hand we’ve been dealt. This is our new normal,” Cervantes said. “We keep fighting. We don’t have a choice.”
The fundraiser at the Wynstone Golf Club in North Barrington includes lunch, a reception dinner and awards, as well as live and silent auctions, organizers said.
Chicago, IL – On Saturday, Sept. 3 Tim Loesch of RE: Epilepsy and Blake Cunneen on the CURE Board of Directors appeared on ABC 7 Chicago’s morning news to discuss RE: Epilepsy’s upcoming Silent and Live Auction and the research it will support. RE: Epilepsy started in honor of Tim’s daughter Maggie, who was diagnosed with epilepsy at age 8. Over the years, they have raised more than $75,000 for CURE and hope to hit $100,000 by the end of 2016. The auction is Saturday, Sept. 10 at The Toadstool Pub in Highwood, IL. Items available for bidding include signed memorabilia from Mike Tyson, Jimmy Butler, and Ernie Banks, as well as experiences such as a suite at the United Center for a Bulls game.
EADDL is the combined effort of one family’s thankfulness for their daughter’s recovery (now 7 years since her last seizure) and a united community’s passion for winning the fight against epilepsy.
Epilepsy Awareness and Education Expo @ The Disneyland Hotel
November 2, 2016 10am – 5:00pm Epilepsy Awareness Day @ Disneyland
November 3, 2016 9am – park closing
Sofie Levy’s school day was almost always cut short. She’d suffer a seizure at noon and spend the rest of the day recovering from it. Medication was no help. Seven years ago, the now 16-year-old underwent surgery to remove a part of her brain that her parents called “the troublemaker” which stilled the chaotic electrical storms in her head. Sofie’s freedom from seizures inspired Sofie and her folks to create Epilepsy Awareness Day at Disneyland Resort, which returns this November for its fourth year. “EADDL needs to bring this misunderstood condition that will develop in 1 of every 26 people at some point in their lifetime, to light.”
This year EADDL will again be partnering with the International League Against Epilepsy (ILAE), the International Bureau for Epilepsy (IBE), Epilepsy Foundation of America (EFA), and Citizens United for Research in Epilepsy (CURE) in their commitment to uniting the world’s epilepsy communities. This year’s event is expected to draw approximately 80 national and regional epilepsy support groups and 2,500 people from 6 continents, as far away as the UK, Germany, South America, and Australia, to Anaheim, Calif.
“We are so proud to be working with the world recognized governing body, and almost every great support group for epilepsy advocacy,” says Candy Levy, event coordinator and most importantly Sofie’s Mom. “When Sofie’s surgeon, Dr. Gary Mathern said that his friends at the ILAE wanted to talk to us about pushing for international unity, we couldn’t wait to be a part.”
Epilepsy affects about 2.2 million Americans, according to the Institute of
Medicine of the National Academy of Sciences report. Onset occurs at any age; however, is most common in children, the elderly and those with traumatic head injuries such as athletes and veterans.
Sofie was just 5 when her parents noticed the brief blank staring spells. “She would just check out for a second or two, cognitively she was gone,” Brad says. “We couldn’t get a handle on it. We couldn’t tell if she was playing with us. Then she lost speech and we knew something was wrong.” Three years and many treatments later, the seizures only intensified.
“Epilepsy is the fourth most common neurological disorder in the U.S. after migraine, stroke and Alzheimer’s disease, yet it receives less than a tenth of the research funding of any one of them.” Fortunately, the Levys found that brain surgery was Sofie’s best option, not last option. They headed to UCLA for testing and surgery, and the rest is now history.
With no big name celebrity spokesperson and with centuries of stigma, epilepsy is in the shadows. Too few talk about it, often doctors miss epilepsy until a convulsion occurs. Epilepsy is not well understood, is under diagnosed, and new treatments are slow to come to market, leaving over 30% of the children with uncontrolled epilepsy.
“Sofie was lucky, we could get to the source of the seizures. Stopping the seizures allowed the other parts of her brain to function well so she could live well. Since surgery she has been seizure free, doing great in school, learned Hebrew and sign language, and has started studying Neurodiagnostics, so that she can soon be a working EEG Tech. Sofie’s father, Brad, now runs a private, in-home EEG monitoring service, catering to kids with Autism and Epilepsy. Sofie plans to follow that same road.
In addition to gathering folks this November, a new found focus for this event will be to spread awareness for the new International Epilepsy Day. “We’re hoping that all of our guests will go back to their home towns and spread the word that there is now an international day for hope. We’re just super excited,” said Brad Levy, event director.
Join over 3,000 anticipated ticketed participants as we flood the Disneyland Park in our EADDL Mickey Mouse event T-Shirts on what would ordinarily be a slow day! Also check the website for more information and for links for ticket purchases and discounted hotel rates.
Chicago, IL – Last night at The Field Museum, Citizens United for Research in Epilepsy (CURE) raised more than $2 million for epilepsy research with the help of more than 1300 attendees and featured guest Jon Stewart.
During the event and in time for Military Appreciation Month, CURE announced its new partnership with the Department of Defense, which will culminate in a first of its kind research program that will benefit veterans who have been touched by traumatic brain injury and post-traumatic epilepsy.
“I hope this works,” said Jon Stewart during his performance, right after the audience took part in mobile bidding, raising almost $300,000. “Honestly, I am so tired of disease and pestilence and trouble. People work too damn hard. I can’t tell you how much I applaud you all for making a difference.”
Stewart enthralled the crowd with his characteristic blend of satire and sincerity, helping draw a record number of guests to the event, old and new faces alike.
In its 18th year, CURE’s Annual Chicago Benefit, with the help of presenting sponsors Cafaro-Livingston Charitable Trust and GCM Grosvenor, brought together those personally touched by epilepsy, as well as those who understand the critical and growing need for a cure. While epilepsy affects an estimated 3 million Americans, it receives less total funding per patient than Alzheimer’s, Parkinson’s and autism, according to statistics from the National Institute of Health.
“We have much more to do because, even though you hear little about epilepsy until it touches your life, epilepsy affects one in 26 Americans in their lifetime,” said CURE’s Founding Chair Susan Axelrod. “This is a major public health problem that places a huge burden not just on the individual, but on society.”
Event chair David Storch, chairman, president and CEO of AAR Corporation started off the evening by discussing his lack of a personal connection to epilepsy.
“As I learned more about the prevalence of the disease, I realized my concerns were minor compared to the 65 million people worldwide, and their families, who are impacted,” said Storch.
Among the other dignitaries at last night’s event were the Honorable Ed Burke and Justice Anne Burke, Governor Pat Quinn, Congresswoman Jan Schakowsky, the Honorable John Cullerton, Senator Dan Bliss and Senator Dan Kotowski. In addition, guests were entertained by performances from the Misericordia Heartzingers Choir, The Nostalgics, and the Walter Payton College Prep Jazz Band.
Much like Sue and her fossilized bones guarding over the crowd Monday night, CURE hopes to make epilepsy extinct.
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