Past Events



Transition to Adulthood

A parent led panel discussed several challenges as our CLS children age to adulthood including Sexuality, Puberty, Building an Adult Day Program, Getting our CLS Adults into a ‘Forever Home’, Healthcare options, Social Security and Guardianship.

Sanford Research CoRDS Rare Disease Registry

Sanford Research: Polly Gill, Research Project Manager Coordination of Rare Diseases at Sanford (CoRDS) presented an informative session on the CoRDS registry and how it is used with Researchers

  • Presented on Tuesday, February 18, 2025, 6pm Central Time zone

    Females with CLS: Childhood with a “Hidden” Disability

    Parent Abbey Houser discussed her journey as a mom as she searched for a diagnosis for her daughter

    • Originally recorded on Thursday, November 19, 2024, 7:00 PM Central

    Recreational Activity Opportunities for Adults with CLS

    Discussion led by Mo Guy and Kristi Smith, moms of CLS Adults shared their experience with coordinating with people in their community to ensure recreational activities are provided for people with disabilities

    • Originally recorded on Tuesday, August 27, 2024, 6:00 PM Central