Upcoming Events

Future Coffin Lowry Syndrome Family Gatherings

2027 CLS Family Gathering – Pittsburgh, PA July 8 -11, 2027

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.

  • CURE NDD: Dr. Jin Lee founder of CURE NDD will discuss her organization’s purpose and vision. CURE NDD is a collaborative nonprofit consortium dedicated to advancing research, advocacy, and awareness for neurodevelopmental disorders (NDD), with a special focus on X-linked neurodevelopmental disorders (S-linked NDDs). The CLS Foundation is a member of the CURE NDD Consortium.
  • WHEN: February 2026 (Time 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.
  • 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) – 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.