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 CdLS Foundation. The walk is named after Will and Hope Kurth, who were both born with Cornelia de Lange Syndrome (CdLS), a rare genetic condition […]

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 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 […]

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 of educational webinars… “The Big Worry; Future Residential Options” We often hear this is the biggest worry. Where, when, how much it will cost, and […]

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 a series of educational webinars… “Wrap Up: Did you Get Real?” We started with wanting to be real and created a list of goals 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 important that we as a community surround them with support and unconditional love. Although they have lost their child, grandchild, or sibling – they still […]

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 to pay attention to and how will it change your plan? Government Benefits, Special Needs Trusts, ABLE accounts, Secure Act 2.0, Tax Changes and more. […]

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.