Giving Tuesday Fundraiser for Pheo Para Alliance (December 2, 2025)

It's Giving Tuesday, and time once again for my annual fundraiser for the Pheo Para Alliance, in honor of Scott. I am now in my second year of serving on its Board of Directors. This year, I led a mighty team of pheo para patients and advocates at this year's Rare Disease Week on Capitol Hill. Restoring funding for medical research and public health is an increasingly pressing issue, not just for rare disease but for all of us who need health care. I was proud to be one of the 1,000 advocates from all 50 states educating our legislators on rare disease and ways to improve access to health care. I was also proud to serve on the search committee this year and select our next Executive Director, JoBeth McCarthy. Stephanie Alband, our previous Executive Director, did an amazing job of building a strong team of volunteers and putting the Pheo Para Alliance on solid financial footing despite limited resources. I am looking forward to working with Jo and the PPA to build on that foundation and expand the ways that we can serve as resource for patients and their families. 

 An exciting development this year was the FDA approval of belzutifan for metastatic pheo/para (the only FDA approved treatment currently available). The PPA has been hard at work providing webinars and other resources from medical experts to educate patients about belzutifan and other treatment options. To support these efforts, I will match the first $1,000 in contributions and will be grateful with any amount that people can donate toward this cause. As with previous years, this fundraiser will run until Scott's birthday on December 21. I can personally attest that the funds will be used wisely by a very dedicated and resourceful team, and your support would mean a lot!

Donate here: https://secure.givelively.org/donate/pheo-alliance/donate-to-support-your-pheo-para-phriends-on-giving-tuesday/bessie-lewis

Pheo Para Alliance website: https://pheopara.org/