Get Involved

Whether donating their time, expertise or money, parents, relatives, friends and community members give generously to the Foundation.

Inspire others to take steps to learn about CdLS.

Raise Awareness

There are many different ways to raise awareness of CdLS in your community.

An estimated 30,000 men, women and children have CdLS but remain undiagnosed and/or without the support services the Foundation provides. In order to raise consciousness of CdLS among the public, the Foundation produces materials specific for awareness. These include bookmarks, flyers, brochures, a public service announcement and more. The Foundation also provides materials specific to students and medical professionals.

Calendar of Events

Events are an important and effective way to raise awareness of CdLS and to support the Foundation. There are a variety of events that the CdLS Foundation sponsors and others that are hosted by community members.

Be sure to check the events calendar to see the latest updates on Team CdLS, webinars, Conference, Awareness Day and so much more.


Special Events

The Foundation offers a range of fundraising programs. Some require you to run 26.2 miles, while others ask you to simply lick a stamp.

Host a Fundraiser

Volunteers across the country hold their own fundraising events, generating approximately one-third of the Foundation’s annual budget. You can show your commitment to individuals with CdLS by hosting your own fundraiser. The Foundation is here to help you along the way.