Our oldest son Connor was born with a genetic condition, called Cornelia de Lange Syndrome, or CdLS (www.CdLSusa.org). CdLS is a genetic syndrome that affects 1 in 10,000 live births and impacts intellectual and physical development. There is no cure. The CdLS Foundation 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 make informed decisions throughout their lives. Now on the Board of Directors of the CdLS Foundation, I see firsthand the impact that this Foundation makes on the lives of those affected by CdLS. I strongly believe in the Foundation and am so proud to be part of what they do.
On Saturday, June 9th, I will be participating in the Philadelphia MuckFest mud run to raise money for the CdLS Foundation to help continue to raise awareness and help support the Foundation in its research and family assistance. This will be my ninth year of fundraising. I am so grateful for all of your generosity over the past years. We continue to meet our fundraising goal each year and you all have helped us get there. Over the past 8 years, we have raised over $150,000.
Connor, who is now 10 years old has been challenged with delays in his speech/communication, cognitive development, and his occupational and physical development. Connor is currently in third grade and continues to progress in school. He is doing great in t-ball, loves to swim and ride his bike. He enjoys puzzles, Pokémon, and anything with numbers. We continue to have our challenges, but the support we have from friends, family and the CdLS Foundation is instrumental in helping Connor continue to develop.
I am writing to you to ask for your support. Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts. The Cornelia de Lange Syndrome (CdLS) Foundation is a not-for-profit [501(c)(3)] voluntary health organization. The Foundation provides a host of services that attract, educate, and unite families touched by this rare birth disorder. The Foundation’s services include generating awareness of CdLS, education and information of the disorder, including issuing newsletters called Reaching Out, offering family support, and aiding in the research of particular aspects of the syndrome.