Remembering Scott

Happy New Year, and also, I have a brain tumor! There were a lot of things that happened in 2025, in the world and in my personal life, that I did not see coming. 2025 was a year of health challenges, including increasing neck pain that worsened whenever I was lying down and led to sleep deprivation. Early in December, an MRI showed a meningioma (a typically benign tumor) pressing against the brain stem. A subsequent MRI showed the tumor encasing one of the two vertebral arteries that supply blood to the brain and spine. I met with a Hopkins neurosurgeon a few weeks later, and despite the challenging location of the tumor, he was confident that he could perform a brain surgery that would remove most of the tumor and steer clear of the vertebral artery and brain stem. He explained that he would remove “the core of the orange,” leaving only the “peel,” which would collapse in on itself once the core was gone. He expects that I would be in the hospital for 2-3 days and out of work for app...

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 found...