Brew & BBQ

The 3rd Annual Brew & BBQ for CdLS takes place September 15 from 6:30 to 9:30 p.m. at SweetWater Brewery in Atlanta. The event is hosted by the Musials, parents of Ella Grace, 4, and the Risslands, parents of Riley, 7, both of Alpharetta, GA. Their children were born with CdLS, a rare genetic disorder that causes a variety of physical, cognitive and developmental disabilities.

"This cause is very important to our families since our children were both diagnosed with CdLS shortly after birth," said Mrs. Musial. "The Foundation does so much to educate and support families like our own, we felt compelled to organize an event that would allow us to give something back and ultimately benefit all families affected by this syndrome."

Guests of the event will enjoy sampling locally-brewed SweetWater beer and food from Slope's BBQ, as well as live music, complimentary brewery tours and a silent auction. All proceeds benefit the national CdLS Foundation, a non-profit organization that provides vital information and support to families affected by CdLS in the Atlanta area and across the country.

Tickets are $30 per person in advance and $40 per person at the door, and may be purchased online at www.brewandbbq4cdls.com. For information regarding the event, contact the organizers, Suzanne Musial and Fran Rissland at brewandbbq4cdls@gmail.com. For more information about CdLS, contact the national Foundation at 800-753-2357 or visit www.cdlsusa.org.  This is a 21+ event.

About CdLS

Cornelia de Lange Syndrome occurs in about 1 in 10,000 births. An estimated 20,000 people in the U.S. have CdLS but remain undiagnosed and/or without support services. Individuals with CdLS range from mildly to severely affected, though most have similar physical characteristics including small size, hands and feet; thin eyebrows that meet in the middle; long eyelashes; upturned nose; and thin, downturned lips. Some individuals have limb differences, including missing fingers or arms. Common medical problems include GERD, bowel obstruction, hearing loss, and congenital heart defects. Early diagnosis and intervention is essential to ensure proper management of related medical issues.

About the Foundation

Founded in 1981, the Cornelia de Lange Syndrome Foundation is a family support organization that exists to ensure early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS and their families make informed decisions throughout their lifetime.