CURE eUpdate Newsletter:
CURE
CURE Epilepsy
CURE eUpdate : October 2012
CURE

Dear Friends,

Letter from CUREI have heard epilepsy described as a thief. It can steal your childhood. For adults, it can hinder your freedom to drive or hold down a job. It takes tens of thousands of lives each year. Anti-seizure medications can zap your energy and cloud your thinking. Yes, epilepsy as thief is an apt description. In my case, a rare epilepsy syndrome, rasmussen’s encephalitis (RE), stole my daughter’s childhood and after a radical surgery that removed half her brain, we are still assessing what the remainder of her life will look like.

Epilepsy affects Americans of all ages—more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson's disease combined. It affects 65,000,000 worldwide. That is a staggering fact, and yet epilepsy remains in the shadows, underfunded, and for many a stigma that they prefer not to address. More importantly, in two-thirds of patients diagnosed with epilepsy, the cause is unknown, and in over one-third, the seizures are not controllable by any medicine. Unfortunately, epilepsy can be fatal with approximately 50,000 deaths a year—that’s more than breast cancer.

In 2010 I formed the RE Children’s Project to find a cure for rasmussen’s encephalitis. During my journey both as a parent and as a patient advocate, I began to realize I was part of a much larger family of individuals impacted by rare disease and seizure disorders that were being neglected and not appreciated by the public at large.

This past month I joined the CURE Board to carry my crusade to a more national level and platform to continue to raise awareness and funds for the rare epilepsy syndromes and incurable epilepsy. CURE’s research mission is focused on understanding the underlying mechanisms of the epilepsies rather than developing additional drugs to treat the symptoms of the disease. In other words, they want to find a cure for epilepsy rather than a new drug to stop seizures. That makes sense to me.

CURE has raised more than $20 million to fund research and other initiatives that will advance our understanding of the epilepsies. It may sound like a lot of money, but as documented on the CURE website, the state of epilepsy funding is poor. The government invests $140–$160 million in epilepsy research, but on a per patient basis that translates to less than other major neurological disorders. Even more distressing is that at less than $10 million, non-profit foundations contribute less than $4 per patient to epilepsy research. Parkinson's, by contrast, receives $40–$50 per patient from non-profit sources.

We can do better. It’s time for epilepsy to be rightfully acknowledged as a major health problem that touches all Americans, whether it be our war veterans, young children, aging adults, and those impacted by autism and other comorbidities. Join me in my quest and donate today.

Seth Wohlberg

CURE

Your Dollars at Work

AES/ILAE Joint Workshop

AES/ILAE Joint Workshop to Optimize Preclinical Epilepsy Therapy Discovery
For two days, this workshop, held in London, brought together representatives from the International League Against Epilepsy, American Epilepsy Society, the National Institutes of Health, pharmaceutical companies, as well as doctors and researchers to discuss epilepsy therapy development and what the future holds. While the last ten to twenty years have seen a huge increase in anticonvulsant medications, the workshop portends that the next twenty to thirty years will instead focus on new therapies. These new therapies will address 1) specialized populations with great need for seizure treatment (i.e. intractable populations including both adults and children with epilepsy); 2) developing anti-epileptogenic agents; and 3) developing means to treat the comorbidities associated with epilepsy.

This meeting will result in a series of papers that will give an overview about what models exist and which are best for finding new agents in these populations, as well as next steps. CURE is proud to have been a sponsor of this important workshop.

Charlie Foundation Symposium Showcases Dietary Therapies for Epilepsy
The Charlie Foundation hosted yet another thought-provoking conference September 19-22. The Third International Symposium: Dietary Therapy for Epilepsy & Other Neurological Disorders was held just outside of Chicago in Bloomingdale, IL and featured amazing research on and applications for dietary therapies, including CURE grantees Gary Yellen and Nika Danial, who presented their cutting-edge CURE-sponsored research.

CURE is proud to have been a sponsor of this great conference.
[Click to read more info]

What’s Happening at CURE

CURE Welcomes Three New Board Members

CURE Welcomes Three New Board Members
CURE keeps growing! Please join us in welcoming three new members to the CURE Board: Seth Wohlberg, Ann Benschoter, and Scott Leisher. Each of them brings unique perspective and experience to our Board, and we’re lucky and excited to have them. They show exceptional passion and commitment to this cause, and are ready to hit the ground running with all that we have planned!
[Read their bios]

New CURE Board Officers
CURE is pleased to announce its new Board of Directors officers. Susan Axelrod has been named the Founding Chair. Gardiner Lapham is the new Chair-Elect. Greg Lewis has been named Secretary, and Tom Hynes will remain Treasurer.

Thanks to all our past and present Board Officers for their commitment to this cause!

New Spanish PSA with Aaron Diaz

New Spanish PSA with Aaron Diaz
Muchas gracias, Aaron Diaz! The huge soap opera star is now the Spanish voice of CURE in our TV and radio public service announcements. This is CURE’s first foray into the Hispanic market, and we are excited about this amazing opportunity to raise even more awareness for epilepsy.

Special thanks to our friends at Alario Group, and Ruben Figueres and Michal Siewierski in particular, for making this happen.
[Watch here]

Visit CURE at Upcoming Conferences!
This time of year is busy with industry conferences, and CURE will be there. The annual Society for Neuroscience meeting will take place in New Orleans October 13-17. If you’re attending, please attend the Epilepsy Social on Tuesday, October 16 from 6:45-8:45pm in the Magnolia Room at the Hilton Riverside. Come by and visit with all your colleagues and friends in the field!

We hope to see everyone at the Annual American Epilepsy Society meeting in San Diego November 30 - December 4. Stop by the CURE booth in the exhibit hall and definitely come to the CURE reception on Sunday, December 2 from 7-8:30pm. Exact location will be announced soon. Also make sure to catch Susan Axelrod in the Presidential Symposium on Saturday morning, as she speaks about how the Institute of Medicine’s report impacts the lives of people with epilepsy. We hope to see you soon!

What You Can Do
CURE has so many ways to get involved! Check out our website on how to host an event, share your story, or contact your local representative to express what a cure means to you.

Boston 2012!

 

Coast to Coast

Celebrating Teresa

Celebrating Teresa
On September 13th, nearly 200 guests joined Teresa Walsh’s family and friends to celebrate her birthday and memorialize her life. The 2nd Annual Teresa’s Birthday Benefit for CURE, held at the Minna Art Gallery in San Francisco, featured fantastic live music, a raffle, and an opportunity to raise awareness of epilepsy and SUDEP, from which Teresa passed away in 2010. The event was emceed by San Francisco Chronicle writer Beth Spotswood, and featured entertainment from Biv & The Mnemonics, DJ Branded James, and Cuban Cigar Crisis!. Special speaker Erika Dubreil also took the stage to talk about living with epilepsy.
[Click for more info and to donate]

Fighting Epilepsy with Music

Fighting Epilepsy with Music
Madison, WI was rocking on September 23, when Mike Gomoll and the Joseph Gomoll Foundation hosted a cd release party and benefit concert. The event was in memory of Mike’s son, Joey, who passed away in March 2010, and featured live performances by Sam Llanas (formerly of the BoDeans), Freedy Johnston, and Robbie Fulks. Over 450 guests joined in the festivities, including a silent auction, raffles, family-friendly games, and food specials.
[Click for more info]

Rock the Block

Rock the Block!
Kathy Dodd, Stacey Pigott, and their wonderful supporters have done it yet again—they truly rocked the block for pediatric epilepsy research! Guests from all over Chicagoland converged on a private club in downtown Chicago for a fun-filled evening featuring dinner, drinks, silent and live auctions, and a special performance from JC Brooks and the Uptown Sound. This year’s Rock the Block was the third such event, which, over the years, has managed to fund several epilepsy research grants, connect families affected by epilepsy, and raise awareness of this devastating disease.
[Click for more info]

Golfers Tee Off in Rhode Island for CURE

Golfers Tee Off in Rhode Island for CURE
After 15 years of coordinating a scholarship golf tournament for the son of a Rhode Island State Trooper who lost his young life to brain cancer, Vito Antonucci decided to expand his commitment to helping others. On September 11th at Foster Country Club in Foster, RI, 80 golfers enjoyed a beautiful day with old and new friends. Vito, a close friend of past CURE Board member LeeAnn Brigido, has seen firsthand how epilepsy has affected her family and wanted to help raise money and awareness to find a cure. Much thanks to Vito and all the golfers for the kind and generous support!

Building CURE Globally

Building CURE Globally
On the weekend of October 6th, the two year global initiative known as Building CURE Globally (BCG) started its journey in the Topeka, KS area. Britton Green and team BCG are on a mission to raise at least $1M USD by May 2014 to benefit CURE. The combined efforts of sustainable fundraising events and a dedicated team of family, friends and supporters Building CURE Globallywill help to reach the goal. The first of the two events featured a special 18th birthday celebration for Britton’s cousin, Natalie Jane. The event featured a western theme including delicious BBQ food and dancing. In lieu of presents, guests were encouraged to bring donations. The evening was filled with laughter, friends and family. If you would still like to donate, please click here. On the following day, 28 golfers participated in a scramble tournament at the Western Hills Golf Club. It was a great day of golf with plenty of sunshine and crisp fall weather. In the spirit of developing sustainable fundraising events, plans are already underway to make next year’s tournament even better.
[Read more]

Upcoming Events
Check out these great upcoming events across the country!

Upcoming Event Clipper Round the World
Thursday, November 1, 2012
South Coast of England
Info: Event Details

Upcoming Event Cornhole to CURE Epilepsy
Saturday, November 10, 2012
Ludington, MI
Info: Event Details

Upcoming Event AJGA’s Leadership Links – Jalen Griffin Fundraiser
Friday, December 7, 2012
Info: Event Details

Click here for more information on upcoming events

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