Join us for the 2023 Walk for Will & Hope on Sunday, October 15, at Stony Creek Metropark in Shelby Township. We’ll walk two miles to raise funds for the […]

Cutty’s Okoboji Resort Club 12pm – 5pm. 1528 Highway 86 Spirit Lake, IA 51360 Hosted by Kate Shaw, sister to Kimberly.

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 […]

Sponsored by: Protected Tomorrows’ 2023 Parent University™ Speaker: Mary Anne Ehlert, President & Founder, Protected Tomorrows, Inc. Description: Protected Tomorrows’ 2023 Parent University™ brings you our eleventh in a series […]

Mark your calendars to create your social media outreach.

Sponsored by: Protected Tomorrows’ 2023 Parent University™ Speaker: Mary Anne Ehlert, President & Founder, Protected Tomorrows, Inc. Description: Protected Tomorrows’ 2023 Parent University™ brings you our twelfth and final in […]

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 […]

This is for our new participants as well as those who have been with us before. We will review the basics and hear about what’s new. What do you have […]

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 […]

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 […]