Upcoming Events

Future Coffin Lowry Syndrome Family Gatherings

2025 CLS Family Gathering – Mt. Vernon, Illinois

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:

  • Sanford Research: Alyssa Mendall, Research Project Manager Coordination of Rare Diseases at Sanford (CoRDS)
    • WHEN: Tuesday, February 18, 2025, 6pm Central Time zone
    • 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)
    • WHERE: Zoom
    • Please contact us via email at 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.
  • Coffin-Lowry Syndrome Foundation: Theresa Moxley, President will discuss the National Organization of Rare Disorders (NORD) Breakthrough Summit ‘Equitable Access to Innovation’
    • 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 Receive 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.
  • 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.