Local Father Hosts Annual Obstacle Course to Honor Son and Raise Awareness for Rare Genetic Disorder

Feehan Backyard Obstacle Course 2024

CHESTER SPRINGS, PA — On July 20, Mike Feehan of Chester Springs will host his annual Backyard Obstacle Course in honor of his son, Connor, who is 16 years old and living with Cornelia de Lange Syndrome (CdLS). This event aims to raise funds for the CdLS Foundation, a national nonprofit organization dedicated to supporting research and providing assistance to families affected by this rare genetic disorder.

Cornelia de Lange Syndrome is a spectrum disorder that presents a wide range of physical, cognitive, and medical challenges. Since Connor was a year old, Mike Feehan has participated in various runs, including the Broadstreet Run, Merrill Down and Dirty Mud Run, and the Philadelphia MuckFest Mud Run, all to support the CdLS Foundation. His dedication to raising awareness and funds for the Foundation remains steadfast.

The idea for the backyard obstacle course emerged during the pandemic as a way for Connor and other family members to participate safely. This year marks Mike’s 14th year of fundraising, and he expresses immense gratitude for the community’s generosity. Each year, he successfully meets his fundraising goals, thanks to the support of family members and friends.

The private obstacle course event at the Feehan residence is tailored for family engagement. Mike Feehan invites those wishing to support the cause to donate through the CdLS Foundation’s channels. To back Mike, Connor, and the CdLS Foundation, please visit https://bit.ly/Feehan24. Alternatively, you can send a donation directly to the CdLS Foundation at 30 Tower Lane, Suite 400, Avon, CT 06001, noting “2024 Backyard Obstacle Course” in the memo line.

Navigating Cornelia de Lange Syndrome: Challenges, Progress, and Hope

Cornelia de Lange Syndrome is present from birth, affecting approximately 1 in 10,000 live births without bias towards gender or race. While it is not degenerative, CdLS poses significant developmental challenges. Early diagnosis and intervention are crucial for managing the medical issues associated with the syndrome. Advances in medical care, nutrition, and early intervention therapy have enabled many individuals with CdLS to live well into adulthood.

Common characteristics of CdLS include small stature, joined eyebrows, long eyelashes, upturned nose, thin lips, and developmental delays. Many individuals also experience gastroesophageal reflux disease, bowel abnormalities, congenital heart defects, and other medical complications. Despite these challenges, many can achieve an independent life through adaptive behaviors and skills training.

This annual event highlights the importance of community support and awareness in tackling the challenges posed by rare genetic disorders like CdLS. Through continued efforts and public engagement, the CdLS Foundation strives to improve the lives of those affected by the syndrome. To learn more about the CdLS Foundation or to donate, visit www.CdLSusa.org.

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