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 […]
Join the Arc of Illinois for an important webinar on Medicaid and its vital services. The webinar will be held on Friday, May 23, from 12 - 1 p.m. ET. They will discuss the proposed federal funding cuts and how families and individuals with disabilities can advocate against these changes. Your voice matters—let’s make a […]
You're invited to a presentation featuring the latest updates from the Social Security Administration! Join us as we explore important new information and highlight the online services offered by Social Security. The webinar will be held on Tuesday, June 3, at noon CT. **Presenter:** Megan Forristall, Area 2 Public Affairs Specialist. We look forward to […]
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 […]
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 […]
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 […]
