West Virginia State Senator Patricia Rucker has agreed to sponsor efforts on adding Prader-Willi syndrome as an approved diagnosis for IDDW (Intellectual Developmental Delay Waiver)!
Every state has diagnoses listed in different ways, and each state has a different approach to how they will recognize rare diseases. Most states have it written into a certain bill, but it does not appear to be that way in West Virginia. Sen. Rucker has agreed to find out how and where this can be accomplished in her state so we can push our agenda into open session, which runs the month of February.
Sheri Mills, a resident of West Virginia and mom of five-year-old Lyra with PWS, met with Sen. Rucker to discuss the initial steps ahead of open session in February. This will be a lot of preparation in a short amount of time, but both Sheri and Patricia are ready for this challenge. Sheri recommends meeting in-person with your elected officials to discuss the issues you are having in your state, and discuss how they can help, should you also want to have your state recognize PWS.
If you’re interested in starting the process of having PWS added to your state’s list of developmental disabilities, contact us at email@example.com to get started.