Entries Tagged as ‘Uncategorized’

April 16, 2009

The Foundation finds Facebook

Attention all you savvy social networkers: the CdLS Foundation now has a Facebook Cause page. Thanks to this online tool, we have already raised an extra $650 in support and are more effectively spreading the word about CdLS. Click here to check out our page or click on the “Find us on Facebook” link on [...]

February 12, 2009

Rhode Island family fundraises with figure skates

Lace up those figure skates all you Rhode Islanders, because the 11th annual Canning family skating party takes the ice on Sunday, March 22. Michelle and Chris Canning hold this fundraising event to benefit kids like their 12-year-old son Douglas, who has CdLS. The party takes place from 4:30 – 6:30 p.m. at the Mickey Stevens Sports [...]

December 4, 2008

Support the CdLS Foundation in Style

For those who haven’t heard the news, the CdLS Foundation’s online store is back in action with a new variety of logo apparel and gifts. From t-shirts, sweatshirts, onesies, and hats to tote bags, teddy bears, mugs, and calendars, our store has everything you need to fashionably sport the CdLS Foundation and/or Team CdLS logos. [...]

February 21, 2007

One man’s journey for CdLS

Through the years, people have gone to great lengths to support the Foundation—but none have gone quite as far as Jim Schiwal.
Jim is hiking the 2,175-mile Appalachian Trail, from his home state of Georgia to Mount Katahdin in Maine, to raise money for CdLS.
His inspiration is six-year-old Alley Grubb (in photo with Jim), a little girl [...]

February 9, 2007

Study Says “Good Job!”

In the January-February issue of Reaching Out, there is news of a study – Cornelia de Lange Syndrome: Parental Preferences Regarding the Provision of Medical Information - recently published in the American Journal of Medical Genetics. The study was authored by Dr. Alex Levin, the Medical Director for the CdLS-World Scientific Advisory Council, and Deborah Hinkson, a genetic [...]