Little Ari's Big Fundraiser for PWS Research

When little Ari was diagnosed with Prader-Willi syndrome (PWS), a rare and serious genetic disease with no cure, the Foundation for Prader-Willi Research (FPWR) emerged as a beacon of hope in our caregiver journey.

 

FPWR not only funds top-class research into new therapies and interventions for this challenging condition, but also curates content and manages a community that made a huge difference for us. 

Since 2003, they have invested over $16 million in everything from basic research to late-stage drug development, and have achieved a 4-star rating form Charity Navigator for their operational efficiency and transparency.

 

To help this organization continue driving impactful research and patient advocacy, Vy and I are launching this fundraiser to make sure that children with PWS have the best shot at a full, independent life.

Remember that PWS is a genetic disease that occurs randomly and can hit anyone, anytime. You can learn more about PWS and the research that is underway at the FPWR website.

If you are interested in donating directly to FPWR via check, bank transfer, appreciated stock, or any other means, please contact me and I am happy to support that process.  

You can also learn more about our caregiver journey via my posts on Medium, or you can connect with me on LinkedIn or Twitter to learn more about my personal and professional work in biotech, diagnostics, and digital health.