2023 Baltimore Running Festival

Join Team CdLS - Baltimore for a chance to run through the scenic Inner Harbor waterfront area, historic Federal Hill and charming Fells Point; all to raise money for children and adults with Cornelia de Lange Syndrome (CdLS).Team CdLS - Baltimore is in the process of building our team of runners for the big event. […]

Texas Family Gathering

Windhaven Meadows Park - Pavilion 10 a.m. - 2 p.m. CDT 5400 Windhaven ParkwayPlano, TX 75093 Hosted by Tiffany Hendricks, mom to Tristen and Olivia; Bailey Woods, mom to Carson.

2023 Walk for Will and Hope

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 […]

Iowa Family Gathering

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

Multidisciplinary Clinic for Adolescents and Adults

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 […]

2023 Parent University™ Class 11: The Big Worry; Future Residential Options

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 […]

Giving Tuesday

Mark your calendars to create your social media outreach.

2023 Parent University™ Class 12: Wrap Up: Did you Get Real?

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 […]

A Day of Remembrance

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 […]

Parent University: BACK TO BASICS AND WHAT’S NEW

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. […]