May 23, 2013
Written by The Darien Times
Wednesday, 19 January 2011 05:00
A group of Darien mothers are organizing a Valentine-themed fund-raiser for the RE Children’s Project, founded by a Darien parent, on Saturday, Feb. 12, at Woodway Country Club.Grace Wohlberg of Darien was diagnosed with Rasmussen’s Encephalitis, a rare neurological condition that impacts children, in 2008. The devastating condition causes incurable epilepsy, paralysis on half of the body, and cognitive decline.
Darien and surrounding area businesses and individuals are volunteering their services, time, talents, gifts and sponsorship to help support this inaugural event. You can help too.
Her parents, Seth and Deb, were faced with the heart-wrenching decision to remove half of their daughter’s brain in a radical surgery known as a hemispherectomy. Today Grace, supported by her family, friends and the Darien Schools, is a full-time student fighting to regain her health and life with a loving community cheering her on.
This year, Seth Wohlberg founded the RE Children’s Project for the primary purpose of raising money to support scientific research directed toward a cure. The medical and scientific communities believe clinical research in on the verge of major breakthroughs which will facilitate the discovery of treatments for RE, as well as treatments for a larger population suffering from other forms of incurable epilepsy.
In one year, the RE Children’s Project has sponsored a first of kinds research conference in Deer Valley, Utah, and globally elevated the discourse and focus on RE.
More info: REChildrens.org
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