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Get Involved

Many families and individuals with SCAs are interested in getting involved with the NASCARR initiatives and community. Ways that you could get involved include:

  • Join a patient registry

By joining a registry, you can share your longitudinal medical, health and quality-of-life data to help researchers better understand outcomes across the lifespan

  • Collaborate through patient advocacy groups (PAGs)

Engage with NASCARR by getting more involved in your affiliated patient advocacy group. Patient Advocacy Group (PAG) partners are a critical and essential component of NASCARR and the long-term success of the NASCARR initiatives. 

  • Join a NASCARR committee 

NASCARR committees are wanting to have family and patient representation. Committees are recruiting members to help with the workload and typically meet online monthly. Committees currently include:  

  • Communication and Dissemination= Help spread the word!
    • This committee needs help with outreach of grants and fellowship opportunities, recruitment for studies, newsletter development, and much more!
  • Partnership Engagement = Connecting Research to the Community.
    • This committee needs help with developing goals and initiatives which benefit the patient community, as well as identifying patients and families who are willing to participate in advisory roles for new studies and research opportunities.
  • Serve on a Patient Advisory Committee 

Research studies need input from patients and families for everything from design and recruitment to consent forms and materials. Advisory opportunities typically include monthly online meetings and are specific to a dedicated research project. Current NASCARR projects with patient advisories include:

  • Community-based participatory research panel on priorities for measurement: Dr. John Strang and Dr. Siddharth Prakash are seeking 50 youth and young adult patients with SCA (ages 13-25), 50 parents/caregivers of youths with SCA, 30 experts in SCA clinical care, and 10 SCA community advocates/educators for a youth-supported Delphi study to identify research priorities that reflect the needs and experiences of SCA communities.
  • Advocate advisory panel: Dr. Strang and Dr. Prakash are also inviting 4 highly motivated young people (13-30) with lived experience of SCA conditions and strong advocacy or leadership experience to serve on an advisory panel that will steer outreach to other self-advocates and community representatives and help ensure that research tools and materials are clear, respectful, and relevant.
  • Contribute to awareness and education

If you’re unable to commit to an ongoing committee and still want to participate to help NASCARR meet its goals, consider one of the following opportunities as well.

  • Share personal photos for the NASCARR website or personal stories for the NASCARR newsletter to increase awareness and understanding of sex chromosome aneuploidies

If you are interested in getting involved in any of the above aspects of NASCARR, please reach out to your Patient Advocacy Group or contact NASCARR@UCDenver.edu.