Family Support & Connections
Alström Syndrome International (ASI) Family Support
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.
What We Do:
Answer Your Questions
We’re your first point of contact for any questions you have about Alström Syndrome, its impact, and available resources.
Guide You to the Right Care
We help direct families and individuals toward gaining access to the correct medical treatments and specialists.
Give Access to the ASI Facebook Group
We help direct families and individuals toward gaining access to the correct medical treatments and specialists.
Connect You with a Global Community
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.
Keep You Informed
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
Meet Our Team
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.