Upcoming Events

Future Coffin Lowry Syndrome Family Gatherings

2025 CLS Family Gathering – Mt. Vernon, Illinois, June 26-29, 2025

Download a copy of our 2025 Gathering Registration form (PDF version).

Download a copy of our form Gathering-Registration2025-Word form (Word version).

Only one form is needed per family.

Future CLS Talks sessions

Every quarter, the CLS Foundation hosts an interactive zoom meeting called ‘CLS Talks’ for parents led by parents. Each meeting is a specific top of interest to the parent presenters. Check out our upcoming events to participate in future CLS Talks session.

The following CLS Talks sessions are planned:

  • Transitioning from Adolescence to Adulthood – A Parents Perspective
    • WHEN: Tuesday, May 13, 2025 6pm Central time zone
    • WHERE: Zoom
    • Please contact us via email at CLSFoundation@outlook.com if interested in attending or have a question to submit. If you are a current member of the CLS Foundation FB group, you have already received an invitation to attend through the FB group.
  • Remember the Girls: Taylor Kane, Founder and Executive Director of Remember the Girls will discuss her organization that unites, educates and empowers female carriers of X-linked genetic conditions (including Coffin-Lowry Syndrome) a group that is underrepresented and often overlooked by the medical profession.
  • WHEN: To Be Determined (TBD)
  • WHERE: Zoom
  • Please contact us via email CLSFoundation@outlook.com if interested in attending. If you are a current member of the CLS Foundation FB group, you will automatically receive an invitation to attend through the FB group.
  • Ensuring You Have an Effective IEP (Individual Education Plan)
    • WHEN: To Be Determined (TBD)
    • WHERE: Zoom
    • Please contact us via email CLSFoundation@outlook.com if interested in presenting this material. If you are a current member of the CLS Foundation FB group, you will automatically receive an invitation to attend through the FB group.
  • WHERE: Zoom
  • Please contact us via email CLSFoundation@outlook.com if interested in attending. If you are a current member of the CLS Foundation FB group, you will automatically receive an invitation to attend through the FB group.
  • Innovative Housing Solutions – Presentation coordinated by Mo Guy, CLS Mom
    • WHEN: To Be Determined (TBD)
    • WHERE: Zoom
    • Please contact us via email CLSFoundation@outlook.com if interested in attending. If you are a current member of the CLS Foundation FB group, you will automatically receive an invitation to attend through the FB group.
  • Psychosis in CLS – A Mothers Journey with her Daughter, presented by Jessie Cheek, CLS Mom
    • WHEN: To Be Determined (TBD)
    • WHERE: Zoom
    • Please contact us via email CLSFoundation@outlook.com if interested in attending. If you are a current member of the CLS Foundation FB group, you will automatically receive an invitation to attend through the FB group.
  • Preventing Sexual Abuse in the Special Needs Community presented by CeCy Sianez, CLS Mom
    • WHEN: To Be Determined (TBD)
    • WHERE: Zoom
    • Please contact us via email CLSFoundation@outlook.com if interested in attending. If you are a current member of the CLS Foundation FB group, you will automatically receive an invitation to attend through the FB group.