Explore how families affected by Prader-Willi Syndrome are advocating for greater awareness, support, and resources. This article shares personal stories and highlights the importance of community and legislative efforts in improving the quality of life for those living with this rare genetic disorder. (patientsrisingstories.org)
In a heartfelt piece on Rareatives, Kelly Guillou shares her family's journey following her daughter Clementine's diagnosis with Prader-Willi syndrome (PWS). Initially overwhelmed by fear and uncertainty, Kelly found hope through connection with PWS specialists and the broader community. Her story challenges perceptions of PWS, emphasizing that with support and understanding, individuals like Clementine can thrive. (rareatives.com)
Summary: Highlighting a personal account, this article emphasizes the critical need to include Prader-Willi syndrome (PWS) in universal newborn screening programs across all states. Early diagnosis can lead to timely interventions, significantly improving the quality of life for affected individuals and their families. The narrative underscores how delayed diagnosis, particularly in marginalized communities, can hinder access to essential care and support. (pwsausa.org)
A Bosque Farms teen has earned the prestigious Girl Scout Gold Award, a recognition of her leadership and dedication to community service. Her project focused on raising awareness for Prader-Willi syndrome (PWS) and advocating for individuals with disabilities, highlighting the importance of inclusivity and education. (news-bulletin.com)