Join families, board members, and staff members on Rare Disease Day, February 29, 2024, for a viewing party. Many caregivers for children or adults who are disabled or medically complex are exhausted and isolated. The award-winning "UNSEEN" documentary gives an honest glimpse into caregivers' lives to enable change for millions. To watch the preview of […]
We are excited to share that there will be a clinic on March 13, 2024 at Shriners Children's Salt Lake City. The clinic is a wonderful opportunity to meet with mulitiple doctors with expertise in CdLS all in one day.
Join us for a fundraiser benefiting the CdLS Foundation for Zack Homan’s CBSL Project Prizes, Silent Auction, Dinner, and Drinks! Holy Ghost Hall 7960 Mill Station Rd Sebastopol, CA 95472
We hear from so many families about how they are confused as to how to use many tools we now have for planning for our loved one. Some of the tools we have are: 3rd Party Special Needs Trusts, 1st Party Special Needs Trusts, SSI, SSDI, DAC, ABLE accounts, and work income. What tool to […]
This Foundation-managed, free clinic occurs twice yearly at Greater Baltimore Medical Center (GBMC) in Baltimore, MD. Foundation Medical Director Antonie Kline, M.D., Director of Clinical Genetics at the Harvey Institute for Human Genetics at GBMC, has led these clinics since 2001. Any individual age 12 or older with CdLS can attend with their families. Presentations […]
Let’s meet some service providers that assist in vacation planning when you have a family member with unique needs. We’ll hear from some families who had successful and amazing experiences. Now is a great time to start researching and finding out what will work for your family. Register now
Hosted by Emily Munoz, mom to Damien and Paula Messer, mom to William Saturday May 4th, 2024 11:30am - 3:30pm Lambert’s Point Community Center 1251 W. 42nd St. Norfolk, VA 23508 Main dish will be provided by hosts. Families are asked to bring a side dish, snacks or drinks. Register here
Family/Sibling communications. What they should know. What do they think they know and don’t know? If utilizing Corporate Guardians and Trustees, when to start to bring them into your process? How to find peace of mind about the future. Register now
International CdLS Awareness Day is observed each year in order to shed light on this often misdiagnosed, little-known genetic syndrome. Parents, volunteers and others request official Awareness Day proclamations from governors and local leaders; hang awareness flyers in public places; make presentations to civic groups or health workers; write to their local newspapers; and much […]
Join Sara, the sister of Samira, for the Let's Talk About CdLS 5th Annual Parade. Saturday, May 11, 2024 11:00 a.m. – 3:00 p.m. Central Falls High School 24 Summer Street Central Falls, RI
