Congratulations! We have worked all year to take the next steps. But it is easy to get caught in THE GAP. Sometimes when we are working toward a big goal, […]

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 […]

Join our guest speakers who will share with us the critical information you need to know about special needs trusts. Who should you consider as trustees, what are the important […]

Rare Disease Day® takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers […]

There are often challenges when you have a family member with a rare diagnosis like CdLS. All the puzzle pieces that make up your loved one's care can seem so […]

We are excited to share that there will be a Multi-Specialty Clinic for children with CdLS on March 8, 2023, at Shriners Children’s Salt Lake City. The CdLS Foundation and […]

All relationships face stress, but partners caring for a child with a serious illness are confronted with unique challenges. Each person in the relationship may cope differently. You may feel […]

Grief whether anticipatory or in bereavement is a shared experience for the family and yet each member will likely experience and process grief in different ways, over different periods of […]

Join families from California for a CdLS Foundation Sponsored Family Gathering. Graciously hosted by Traci Weber and Kimberly Ingold Saturday, March 25, 2023 11–3 PM PST Harvard Community Center 14701 […]