Recent News in September 2013

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News Releases

California Local Races in Honor of Sister with Rare Genetic Disorder

09/23/13
Chino Hills, CA - (September 23, 2013) The Cornelia de Lange Syndrome (CdLS) Foundation, a national nonprofit family support organization, is proud to have Mary Drexler representing Team CdLS in the Manhattan Beach 10K on Sunday, October 5. Drexler, who is also on the planning committee for the 2014 CdLS Foundation National Family Conference in Costa Mesa, CA, is running in honor of her sister, Mandy, who was born with CdLS.
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Couple Races in Honor of Deceased Son with Rare Genetic Disorder

09/23/13
Manhattan Beach, CA - (September 23, 2013) Six years have passed since Julie and Roy Gonella first mourned the loss of their son, Mikey, who was born with Cornelia de Lange Syndrome (CdLS). To honor his memory, and to help raise awareness of this little-known syndrome, the Gonellas are rejoining Team CdLS for a third time at the Manhattan Beach 10K on Sunday, October 5.
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Local Parents Bring Awareness, Raise Funds for Rare Genetic Disorder

09/12/13
Atlanta, GA - (September 12, 2013) The 4th Annual Brew & BBQ for CdLS takes place September 28 from 6:30 to 9:30 p.m. at SweetWater Brewery in Atlanta. The event is hosted by the Musials, parents of Ella Grace, 5, and the Risslands, parents of Riley, 9, both of Alpharetta, GA. Their children were born with CdLS, a rare genetic disorder that causes a variety of physical, cognitive and developmental disabilities.
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Cornelia de Lange Syndrome Foundation Awards Research Grants

09/12/13
Avon, CT (September 12, 2013)-- As part of its 2013 small grants program, the Cornelia de Lange Syndrome (CdLS) Foundation awarded $23,000 to researchers studying various aspects of CdLS. The following projects were funded:
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25th Annual Charity Golf Tourney to Benefit Individuals with Rare Disorder

09/04/13
St. Louis, MO - (August 28, 2013) On September 16, Madison County Wood Products (MCWP) and Pallet Logistics Management are celebrating the 25th Annual Madison County Wood Products Golf Tournament at Pevely Farms Golf Club in St. Louis, which benefits the Cornelia de Lange Syndrome (CdLS) Foundation.
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CdLS in the News

4th Annual Brew & BBQ for CdLS

09/30/13 , http://clatl.com/atlanta/4th-annual-brew-and-bbq-for-cdls/Event?oid=9167394
Includes Souvenir Pint Glass, Beer Sampling, Barbeque Dinner, Live Music, Silent Auction and Brewery Tours benefiting the national CdLS Foundation.
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Cranford resident praises daughter's special hospital

09/06/13 , http://www.nj.com/cranford/index.ssf/2013/09/cranford_resident_praises_daug.html
Mike and Liz Geraghty of Cranford are the parents of Bozena Geraghty, a resident at the Matheny Medical and Educational Center, a special hospital and educational facility in Peapack for children and adults with medically complex developmental disabilities. Bo was born with Cornelia de Lange syndrome, a genetic disorder that causes a range of physical, cognitive and medical challenges. Bo is 22-years-old and has been at Matheny for four years.
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Haven Horse Ranch partners with Next Step Therapy

09/06/13 , http://www.beachesleader.com/article_5504c73c-1639-11e3-b55b-001a4bcf887a.html
In an effort to better serve the needs of the residents of Northeast Florida, Haven Horse Ranch, St. Augustine's therapeutic riding center has partnered with Next Step Therapy. Next Step Therapy is based in St. Augustine and provides physical therapy, occupational therapy, and speech therapy services to pediatric patients with diagnoses that include Down's Syndrome, seizure disorders, Cornelia de Lange Syndrome, mitochondrial disorders, cerebral palsy, and developmental delays with a specialty in pediatric vestibular disorders.
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4th Annual Brew & BBQ for CdLS at SweetWater

09/05/13 , http://atlantabuzz.com/event/4th-annual-brew-bbq-for-cdls-at-sweetwater/
Includes Souvenir Pint Glass, Beer Sampling, Barbeque Dinner, Live Music, Silent Auction and Brewery Tours benefiting the national CdLS Foundation.
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