The month of February is always associated with love, and its highlight is Valentine’s Day. This year, our community took that show of love to another level by “Turning Love Into Power” and hosted a Valentine-themed party in honor of the Wohlberg family and the non-profit RE Children’s Project.
The project is dedicated to supporting scientific research directed towards a cure for the rare childhood disease of Rasmussen Encephalitis (RE). The Wohlberg’s daughter Grace was diagnosed with RE in 2008 at the age of ten.
The Turning Love Into Power II fundraiser was held the weekend before Valentine’s Day at the Woodway Country Club and offered a sold-out crowd of more than 350 supporters a fun, love-themed evening that featured jazz by The Faker Five, cocktails, hors d’oeuvres, carving stations, fabulous silent auction items, and in honor of Valentine’s Day, a fine selection of sweets.
Guest and keynote speaker was Dr. Frances Jensen of Children’s Hospital Boston, and president of the American Epilepsy Society, who addressed the need for private funding of rare diseases like RE.
“When you have a rare disease like RE, the only hope to accelerate study and find a potential cure is through private funding of scientific research,” Dr. Jensen said.
“The incredible work the RE Children’s Project has been able to move forward in just three short years is nothing short of extraordinary—and it wouldn’t be possible without the help of supporters like you, who have taken a difficult situation with the Wohlberg family and channeled the love you have for them into real and sustainable help through the funding of research into this devastating disease.”
Rasmussen Encephalitis is a rare neurological condition that typically affects previously normal children between the ages of two and fifteen years old; it rarely affects adults.
The disease process often runs its course over a one to two year period during which time one half of the body function is rendered useless and epileptic seizures continue unabated. An unusual feature of the disease is that it is usually confined to one hemisphere of the brain and is resistant to standard anti-seizure medicines.
The only known "cure" is a cerebral hemispherectomy—the removal or disconnection of the affected side of the brain. This radical surgery has been the standard form of treatment for more than 50 years. Grace’s parents, Seth and Deb Wohlberg, were faced with the heart-wrenching decision to remove half of their daughter’s brain.
The surgery was done in February 2009, and Grace underwent a second “redo” surgery in March 2010. Today, after relearning how to walk, talk and do simple things that many take for granted, Grace is supported by her family, friends, and the Darien public school system, and she is a full-time student fighting to regain her health and life with a loving community cheering her on.
“The RE Children’s Project is a singular force that has become the spokesperson and research arm for RE,” said Seth Wohlberg, founder of the RE Children’s Project and Grace’s father.
“We are excited that our research is starting to attract some of the top epilepsy and neurological scientists in the world. It is our hope that in the next couple years, we can advance the understanding of this disease to know its cause, and then eventually to find its cure. It is our greatest hope that no other parent ever has to go through the agonizing decision to remove half their child’s brain to halt the progression of this disease.”
Chairs of this year’s Turning Love Into Power II event included Susan Ballard, who was also last year’s chair, and her dedicated committee including co-chairs, Susan Graham, Laura Maier and Tammy Taylor, all of Darien.
The RE Children’s Project was founded in 2010 with the primary purpose of raising funds to support scientific research directed towards a cure. The medical and scientific communities believe that clinical research is on the verge of major breakthroughs that will facilitate the discovery of treatments for RE, as well as treatments for a larger population suffering from other forms of incurable epilepsy.
Turning Love into Power II is an event and movement to provide financial aid in support of RE Children’s Projects passionate efforts. The RE Children’s Project has recently formed a Scientific Advisory Board and a RE Children’s Project Research Consortium with scientists at leading institutions including Children’s Hospital Boston, Mattel’s Children’s Hospital UCLA, and Johns Hopkins University School of Medicine, led by Drs. Frances Jensen, Gary Mathern, and Carlos A. Pardo, respectively. To learn more about the RE Children’s Project visit www.REChildrens.org.
Editor's note: This announcement originally was posted Thursday, Feb. 23. The time stamp has been changed for layout purposes on the Home page of Darien Patch.