PWS Association

In this "Spotlight on PWS" video story, we're honored to feature Dini Rao, co-founder of the Colors of Hope BIPOC Affinity Group, her mother Shila Garg, and Dini's daughter Ayoni (10, with PWS). After years of doctors' appointments and countless tests, Ayoni's PWS diagnosis came later than it should have. Once the Rao family finally had answers, and access to the medications and interventions Ayoni needed, they saw meaningful improvements in her daily life. In this powerful conversation, Dini and Shila open up about: - The implicit biases and racial disparities families of color often face on the path to diagnosis. - How PWS intersects with their family's Indian culture, where food holds deep meaning and added complexity with a PWS diagnosis. - "No More Lasts," PWSA | USA's PWS equity initiative launched this year as a key priority for our community. This is a story about resilience, advocacy, and the importance of equitable access to care for every family affected by PWS. Learn more about our Equity Committee and initiatives: https://www.pwsausa.org/equity-committee/