“The Gap” is our desire to get to PERFECTION versus recognizing HOW FAR WE HAVE COME! We will use some exercises to walk out of the class with a positive feeling about our SUCCESSES! And…a reality check of what we should work toward in 2025. Register now
Save the date for our monthly virtual Meet Up which is of a more casual style focused on connection, collaboration and support. Bring your questions or life experience to the table around the Holidays! CaliforniaSibs is the official California state chapter of the nationwide Sibling Leadership Network (SLN). Our Mission is to partner with Sibs […]
This is it! The final Bulls and Barrels Event of the seriesPrize Buckles will be awarded, and Hollywood Harris will be there to entertain the crowd– you don’t want to miss this! Adults $10, Students $5 and 5 and under are free At Carters Arena in Chiefland, FL. Have some rodeo fun while raising awareness […]
Losing a loved one with CdLS at any age can be life-altering. Parents, siblings, relatives, and friends feel a tremendous loss and often have difficulty understanding why. It is so important that we as a community surround them with support and unconditional love. Although they have lost their child, grandchild, or sibling – they still […]
Anticipating the birth of a child can be one of the happiest times for parents. But when babies have life-threatening medical issues and begin their lives in the NICU, everything can change. For some parents, this may mean navigating a new role: learning how to navigate the NICU and communicate with the medical team; figuring […]
For the entire month of March, when you purchase a $2.50 reusable Community Bag at the Stop & Shop located at 498 Bushy Hill Road, Simsbury, CT, $1 is donated to the CdLS Foundation. Our goal is to sell 500 bags (including virtually), equivalent to $2,000500 bags (including virtually), equivalent to $2,000 raisedraised. We are […]
Please join us to explore how completing healthcare advance directives for/with your child can support your family’s goals and wishes. We will discuss the importance of discussing and documenting healthcare wishes upstream of an emergent/urgent medical event, medical implications of and quality-of-life considerations related to advance directives, and currently available directives. Presented by Fiona Sampey […]
Multi-Specialty Clinic for children with CdLS will be held on March 12, 2025, at Shriners Children's Salt Lake City. The CdLS Foundation and Shriners Children's Salt Lake City have a long-standing partnership. We are truly grateful to work together. The clinic is a wonderful opportunity to meet with multiple doctors with expertise in CdLS all […]
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 […]
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 […]
