The CdLS Foundation is excited to announce the launch of our Virtual Support Groups for Parents—a new way to connect, share, and support one another. First Session: 🗓 Thursday, June 5, 2025 🕖 7:00 – 8:00 p.m. ET At the CdLS Foundation, we believe no parent should walk this path alone. As caregivers, you are […]
You’re invited to a roll-a-thon in honor of Paige! Bring your favorite wheels – bikes, skates, hoverboards, anything with wheels and get ready to roll! Minimum donation of $5 per person. “Rolling for Paige” is a special fundraiser dedicated to raising awareness about Cornelia de Lange Syndrome (CdLS), a rare genetic disorder. Paige, the inspiration […]
The Arc of Illinois is excited to invite you to their upcoming Family Support Group Webinar, designed especially for parents, family members, and caregivers of loved ones with intellectual and developmental disabilities. This is more than just a webinar — it’s a chance to connect with others who truly understand your journey. Whether you're looking […]
Making major decisions about interventions such as feeding tubes or tracheostomies is one of the greatest responsibilities caregivers face for their child, weighing not only risks and benefits but also the goals of care for their child. Join a panel of experienced parents as they share valuable insights into their decision-making journeys. Discover the factors […]
The CdLS Foundation is pleased to offer Virtual Support Groups for Parents, providing a consistent opportunity to connect, share, and support one another. 🗓 Thursday, July 3, 2025 🕖 7:00 – 8:00 p.m. ET We believe no parent should walk this path alone at the CdLS Foundation. As caregivers, you are the backbone of our […]
We will walk thru an estate and financial plan and learn how it is “activated”. Who does what, who knows where everything is, and how can we make sure the family knows what to do? It is not fun to think about, but it is certainly an important topic that we all need to make […]
Join families from New York and the Northeast for a CDLS Foundation-sponsored Family Gathering. Saturday, July 12, 2025 2 – 6 p.m. ET The Arp Home 9B Sandpiper Lane Rexford, NY (9B is on the white mailbox with a long driveway) Graciously Hosted by Jennifer and Nicholas Arp, parents to Jenna. Bring […]
The CdLS Foundation is pleased to offer Virtual Support Groups for Parents, providing a consistent opportunity to connect, share, and support one another. 🗓 Thursday, August 7, 2025 🕖 7:00 – 8:00 p.m. ET We believe no parent should walk this path alone at the CdLS Foundation. As caregivers, you are the backbone of our […]
Retirement usually is a goal, right? We might love what we do, but the goal to retire securely and find that security to do so is usually a goal of our own planning. When should we take Social Security? If we move, what has to change? Do we need to update our estate planning documents? […]
The CdLS Foundation is pleased to offer Virtual Support Groups for Parents, providing a consistent opportunity to connect, share, and support one another. 🗓 Thursday, September 4, 2025 🕖 7:00 – 8:00 p.m. ET We believe no parent should walk this path alone at the CdLS Foundation. As caregivers, you are the backbone of our […]
