Upcoming Events

Future Coffin Lowry Syndrome Family Gatherings

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

The Snavely Family from Cranberry, PA along with other Pennsylvania families will host this event. Contact Karen Snavely if you are interested in volunteering.

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.

  •  March 2026 CLS Talks – Advancing CLS Research and Patient Engagement Opportunities: Dr. Jin Lee CLS mom and founder of CURENDD.org will discuss her organization’s purpose, vision and the future of CLS related research. 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: Thursday, March 19, 2026, 6pm Central Time zone
  • WHERE: Join Zoom Meeting
    https://us06web.zoom.us/j/6329600922?pwd=RThMZDJEQUtGU2VTN0NHL1VJc29qQT09&omn=83423277169

    Meeting ID: 632 960 0922
    Passcode: SU805h
     
  • 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.