Erin Cooper Carter, PhD (mom to Victoria, age 6 living with PWS) is leading the effort to have PWS added to the state’s list of developmental disabilities in Ohio! This important piece of legislation is being filed by Representative Bride Rose Sweeney (D-16) and will likely be co-sponsored by Representative Nick Santucci (R-64).
When asked about the bill and what inspired her to undertake this challenge, Erin said “Before I had Victoria, I assumed, like many people do, that disabled children are guaranteed the services they need to live full lives. I assumed the financial burden was not placed at the family’s feet – because that’s what I think a civilized society should do. At the bare minimum, we should take care of our most vulnerable children. Unfortunately, that is not the case for far too many families, in far too many states, including Ohio. I’ve always loved a good challenge, and this is one that needs to be addressed. We MUST continue to move the needle for families of children living with PWS. If our community doesn’t do it, who will? I’m honored to leverage my skillset to help not just my family, but hundreds of other families in Ohio like mine. And I’m incredibly thankful for Representative Sweeney’s unwavering support. Let’s do this!”
If you or someone you know is interested in leading the charge in your state, please email PWSA | USA at Advocacy@pwsausa.org.
PWS State Qualifier Map