Both of my boys have a rare form of Congenital Muscular Dystrophy for which there are no treatments and no cure. After our family settled into their diagnosis and their care plan, I decided to start advocating for rare diseases and for people with disabilities. Families like ours who face these challenges rely on affordable healthcare and on laws that provide accessibility to buildings, education, jobs, and so much more. While we have seen many amazing advancements in the past 20 years, there is still much work to be done.
I support legislators like Robyn who see individuals with disabilities as valued members of the community and who ask, “What can I do to support you?”. I was encouraged when she authored a bill that would require universal changing stations in certain buildings which would make life easier for caregivers of adults who require this type of care. It may seem like a small thing but for caregivers it is huge!
My dream for Wisconsin is for it to be a place that welcomes, values, supports, and includes those who have a rare disease and/or have a disability. Robyn is helping that dream become a reality. – Lani