RARE Foundation Alliance Member Spotlight: Matt Larsen

Name: Matt Larsen

Organizations you represent: Illinois Spina Bifida Association, Executive Director

What led you to the rare disease community: Having close family friends and relatives with rare conditions taught me the strength of family teams and their circles of support.  I am grateful for the opportunity to bring together a network of family teams and professionals and to build on their efforts to engage the broader community.  Improved care and quality of life are possible if we pull together in the same direction over time.

What do you think are the areas that are lacking in the community (specific to your org or in general) / What are some of the pain points? Effective communication at diagnosis and adult care coordination are two of the challenges we are working to address in the spina bifida community. Thanks to advances in medical care in the 1960s and 70s, there is a pioneer generation of adults with spina bifida living well into adulthood.  Medical, therapeutic, and community support advances continue, and there is a vibrant community of people living with spina bifida.

I believe our tasks are to:

• communicate this effectively to medical providers and new and expectant parents, and 
• ensure that no one ages out of quality care, support, and empowerment. 

What are your areas of expertise? Experience as a community organizer has been helpful in my work with the Illinois Spina Bifida Association (ISBA). The Community-Clinic Connection program that I developed starts with individual meetings in community and outpatient clinic settings. By developing in-person relationships with people throughout Illinois, our team of community health workers can build trust with families. That trust increases the impact that ISBA’s social workers and vocational rehabilitation counselor can make through continued coaching and support.