The Darien Times

Turning Love Into Power II: Community to gather again for Grace, rare childhood disease fund-raiser

Written by The Darien Times
Tuesday, January 24, 2012 02:19 PM

Supporters of the RE Children's Project are throwing a Valentine's party in honor of the Wohlberg family and their daughter Grace, who suffers from the rare childhood neurological disease of Rasmussen Encephalitis, also known as RE. The Turning Love Into Power II benefit will be held Saturday, Feb. 11, at the Woodway Country Club, 540 Hoyt St.

The evening will feature jazz by the Faker Five, cocktails, hors d'oeuvres, carving stations, and in honor of the upcoming Valentine's Day, a fine selection of sweets. Last year's inaugural event was completely sold out, so those interested in attending and supporting the RE Children's Project are encouraged to purchase their tickets in advance.

"Supporting the RE Children's Project with the Turning Love Into Power II fundraiser is just one way we as a community can open our hearts to the Wohlberg family who have so selflessly founded this extraordinary movement," Susan Ballard, chairman of the event, said. "To know that we are helping fund a potential cure for this devastating disease is extremely heartwarming, and allows us to take action on behalf of Grace and every child facing the hopeless diagnosis of RE."

Ballard, who was also last year's chairman, is working with the help of a dedicated committee including this year's co-chairmen, Susan Graham, Laura Maier and Tammy Taylor, all of Darien.

In 2008, 10-year-old Grace Wohlberg was diagnosed with Rasmussen's Encephalitis, a rare neurological condition that typically affects previously normal children between the ages of 2 and 15 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, 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.

"While our daughter Grace has already gone through the worst of this disease, and it is too late for her to find an alternate treatment to the radical hemispherectomy surgery, it is the goal of the RE Children's Project to permanently put the neuro-surgeons out of business by eradicating the hemispherectomy as a treatment for RE," Seth Wohlberg, Grace's father, said. "It is our dream to have any future children affected by RE to have the option of alternate forms of safe and sound medical treatment. And, to hopefully someday find a cure so that no one has to go through what we have gone through."

Last year's inaugural event raised more than $200,000 which is currently being used to fund several research initiatives into RE. One recent venture has been the formation of the RE Children's Research Consortium between Children's Hospital Boston, Mattel's Children's Hospital UCLA and Johns Hopkins University School of Medicine, and led by Drs. Frances Jensen, Gary Mathern, and Carlos A. Pardo, respectively. The goal of the RE Children's Research Consortium is to make clinical information as well as brain tissues and biological samples more available for research purposes directed towards RE.

Another area of support is targeted funding of several research initiatives including most recently to UCLA led by Dr. Gary Mathern, professor of pediatric neurosurgery and director of the UCLA Pediatric Epilepsy Program at Mattel Children's Hospital, Dr. Carol Kruse, Professor of neurosurgery, and Dr. Harry Vinters, Professor of neuropathology, who are working on narrowing down the causes of the disease by developing an animal model that will enable them to determine whether immune cells or infectious agents such as bacteria or a virus play a major role. Currently, there is no known cause of RE.

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. To learn more about the RE Children's Project or to R.S.V.P. to the February 11, 2012, benefit, visit www.REChildrens.org.

More info/sponsorships: REChildrens.org, 203-316-0369, swohlberg@rechildrens.com

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