Hosted by Courageous Parent Network Social media has transformed how families navigate complex medical journeys, creating unprecedented opportunities for connection, information sharing, and support. For parents of children with medical complexity and rare conditions, online platforms can offer vital lifelines to communities who understand their unique challenges. Yet these same spaces also present risks that […]
Join families from Texas for a CdLS Foundation-sponsored Family Gathering. Graciously hosted by the Hendricks and Woods/Jacob families. Saturday, May 30, 2026 10:30 a.m. - 1:30 p.m. C.T. Victory Forest Community Center 3427 Hemphill Street Fort Worth, TX 76110 Family Gatherings are planned with your whole family in mind. CdLS Foundation staff and Clinical Advisory […]
The next CdLS Foundation Parent Support Group is scheduled for June 4, and we’d love to welcome you. 📅 June 4, 2026 🕖 7:00–8:15 p.m. ET 📍 Zoom (link provided upon registration) 💡 Topic: Behavior This confidential, parent-only space offers time to: -Share what’s on your heart — or just listen -Learn from other parents […]
June Parent University™ Class Presented by Protected Tomorrows Class Five ABLE Accounts: The Basics and What to Use When June 11, 2026 12:00 – 1:00 p.m. CST In this exciting session about Able Accounts, Protected Tomorrows will cover: The basics of ABLE, how ABLE differs by state, and how to stay out of trouble. What […]
Join families from North Carolina and surrounding states for a CdLS Foundation-sponsored Family Gathering. Graciously hosted by the Radionov Family, parents of Kaleb. June 13, 202611 a.m. - 4 p.m. ET Mt. Olivet UMC1082 Community RoadLexington, NC 27295 *A Hoyer lift and adult changing table available at the venue.* Bring the whole family and join […]
The next CdLS Foundation Parent Support Group is scheduled for July 2, and we’d love to welcome you. 📅 July 2, 2026 🕖 7:00–8:15 p.m. ET 📍 Zoom (link provided upon registration) 💡 Topic: Healthy Living This confidential, parent-only space offers time to: -Share what’s on your heart — or just listen -Learn from other […]
July Parent University™ Class Presented by Protected Tomorrows Class Seven The Ins and Outs on the Uses of Special Needs Trusts July 9, 2026 12:00 – 1:00 p.m. CST In this exciting session about Special Needs Trusts, Protected Tomorrows will cover: • What kind and when should you set up a Special Needs Trust? How […]
Host: Beaumont FamilyPerson with CdLS: Annie Beaumont Date: August 1stTime: 2-5 PM Location: Burning Bush Community Center1313 Burning Bush Ln.Mount Prospect, IL 60056
The next CdLS Foundation Parent Support Group is scheduled for August 8, and we’d love to welcome you. 📅August 6, 2026 🕖 7:00–8:15 p.m. ET 📍 Zoom (link provided upon registration) 💡 Topic: Bring Your Loved One This confidential, parent-only space offers time to: -Share what’s on your heart — or just listen -Learn from […]
The CdLS Foundation, in partnership with Shriners Children’s Salt Lake City, is pleased to announce a Multi-Specialty Clinic for children with Cornelia de Lange Syndrome (CdLS) on August 13, 2026, at Shriners Children’s Salt Lake City. This clinic provides children with CdLS and their families access to comprehensive, coordinated medical care in one convenient location. […]