Family Support & Connections

A smiling older woman with white hair and glasses sits in the center, surrounded by three young boys, in a room with beige walls and carpeted floor.

Navigating life with Alström Syndrome can present unique challenges, and at Alström Syndrome International (ASI), we’re here to ensure you and your family never walk that path alone. Our dedicated team of Family Support Coordinators provides compassionate guidance and practical assistance to individuals affected by Alström Syndrome and their families worldwide.

A large group of people, including adults and children, gathered on a staircase inside a building, posing for a group photo and smiling.

What We Do:

  • We’re your first point of contact for any questions you have about Alström Syndrome, its impact, and available resources.

  • We help direct families and individuals toward gaining access to the correct medical treatments and specialists.

  • We are the team that grants families and individuals access to the private Facebook group. When you request membership please check your email and messages, especially the junk and spam folders, as we will reach out to make contact with you prior to granting access.

  • We offer invaluable support by connecting families with others who are on a similar journey. Whether in the same country, region, or facing similar circumstances, these connections provide a vital network of shared understanding and encouragement.

  • Our Family Support Coordinators work to collect essential patient information to add to the ASI master patient list. This ensures families receive timely updates regarding:

    • Groundbreaking research and medical advances

    • International conferences and upcoming clinics

    • Important stakeholder meetings and family retreats

Our Family Support team is led by Gina Denbow, ASI’s Director of Family Support. She is joined by a compassionate and knowledgeable group of Family Support Coordinators, including Shelly Marshall, Jenne Farley, and Matt Castro. For our Spanish-speaking families, Susana Canos from Spain is available to provide support in Spanish.

We are committed to empowering families and individuals impacted by Alström Syndrome with the information, resources, and connections they need to thrive. Please don’t hesitate to reach out – we’re here to help.

Email familysupport@alstrom.org to get in touch with a member of our family support team!

Meet Our Team

Two children, a girl with glasses and a boy, are laughing and playfully holding hands during a social gathering. The girl is wearing a purple shirt and the boy is wearing a teal shirt. In the background, other people are seated at a table with plates, cups, and water bottles.

Family Support Committee

  • Gina Denbow

    Family Support Director

  • Shelly Marshall

    Family Support Coordinator

  • Jenne Farley

    Family Support Coordinator

  • Matt Castro

    Family Support Coordinator

  • Susana Cañas

    Family Support Coordinator

  • Angie West

    Family Support Coordinator