Join us for a new, fun event to raise awareness and funds for our CdLS community. The Eckerd College Science Outreach Club has recently established a Students for Rare chapter affiliated with the National Organization for Rare Disorders. Their mission is to raise awareness about rare diseases and advocate for equitable access to healthcare for individuals within the […]
Join a panel of siblings to gain insights into the fears and worries that siblings carry, the things that helped them (and those that didn’t), and how loving a brother or sister with medical complexity shapes them. This session will be moderated by Dr. Wendy Plante, who for over twenty years has worked with siblings […]
Exciting news! The New England Golf Classic is going virtual!! Join us for an interactive, new way to continue raising awareness and funds and keeping the tradition going. You can play on any course, with anyone, at any time between May 10 and August 31, 2025, and compete with others across the country. You will have […]
Meet Zuri, Our Joyful Bloom! Zuri is a bright light in our lives, full of strength, love, and a spirit that keeps blooming no matter the season. She lives with Cornelia de Lange Syndrome (CdLS), a rare genetic condition that affects her daily life in many ways. But despite the challenges, Zuri continues to […]
International CdLS Awareness Day is observed each year to increase understanding and bring attention to Cornelia de Lange Syndrome (CdLS), an often misdiagnosed and little-known genetic condition. This special day serves as an opportunity for families, advocates, and healthcare professionals to unite in raising awareness and promoting early diagnosis, research, and support for individuals affected […]
Join Us for the 6th Annual CdLS Awareness Parade & Celebration! 📍 Central Falls📅 May 10, 2025🕘 11:00 a.m. We’re proud to host our 6th annual event in honor of Samira, our beautiful sister who was born with Cornelia de Lange Syndrome (CdLS). This day is all about raising awareness for CdLS and celebrating children with […]
This event will help families understand the numerous stages to be considered while developing a special needs master plan for their loved one experiencing a disability. Presented by Mary McDirmid with All Needs Planning; top considerations they hear and help their clients with include: government benefits funding their lifetime tax efficiency insurance housing employment trusts […]
You scream! I scream! We all scream for ice cream! Meet with friends, enter to win an ice cream party, and learn more about CdLS while supporting Team CdLS in the Bank of America Chicago Marathon this fall. Colin MT Hamilton, Treasurer of the Massaco Chapter of the National Honors Society, an academic merit organization […]
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 […]
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 […]
