Get Full Government Meeting Transcripts, Videos, & Alerts Forever!
Get email alerts on the Prader Willi topic
No spam. Unsubscribe anytime.
Senate committee adopts Prader‑Willi awareness day at the Capitol after family testimony
Summary
The committee heard testimony from parents and adults with Prader‑Willi syndrome and unanimously approved SR 567 as amended to designate a Prader‑Willi 'day at the Capitol' rather than a statewide day, following an amendment required by chamber rules.
The Senate Health and Human Services Committee heard testimony from family advocates and adults with Prader‑Willi syndrome and unanimously advanced SR 567 as amended to create a Prader‑Willi awareness day at the Georgia State Capitol.
Sponsor and members noted a technical change required by chamber rules: the resolution should designate a 'day at the Capitol' instead of a 'state' day. Parents and advocates described PWS as a rare, lifelong neurodevelopmental disorder characterized by early failure to thrive and later, life‑threatening hyperphagia. Lisa Matyszak, president of the Georgia Association for Prader Willi Syndrome and a researcher with the Foundation for Prader Willi Research, explained the condition’s medical complexity and the need for coordinated care and safety measures. Physician and parent Jessica McCabe urged that PWS be an automatic qualifier for Katie Beckett services to ensure early intervention; she described denials and the financial and administrative burden families face securing benefits. An adult with PWS described living with supports and the importance of waiver access for adults.
Committee adopted the amendment changing the wording to reflect a 'day at the Capitol' and then voted to 'do pass' the resolution as amended; both votes were unanimous. The resolution will move forward in the Senate process.
