As many of you know, 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. I have been on the Board of Directors of the CdLS Foundation for several years now and I see firsthand the impact that the 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.

Connor, now 13 years old (a teenager), has been challenged with physical and cognitive development delays. Connor is a happy, sweet, and funny kid. He is going into middle school this fall. He still enjoys playing everything Pokémon. He also enjoys baseball, loves to swim and ride his bike. 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.

Since Connor was one year old, I have participated in various “runs” including the Broadstreet Run, Merrill Down & Dirty mud run, and 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. Last year, due to COVID-19, we switched gears and created a backyard obstacle course that Connor and other family members could participate in. This will be my twelfth 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 11 years, we have raised over $230,000.