Remembering Scott

Todd's GoFundMe fundraiser is now at 148 donations totaling $51,450! Special shoutout to Scott's good friends Josh Kermond and Jhon Restrepo who each made a generous donation to get the fundraiser to exactly $45,000. It's been especially heartwarming to see old colleagues, classmates, and friends of Scott making a donation in his memory to support his brother. It means so much to me, and I know it would have meant the world to Scott. Scott continues to make a difference in this world, sometimes in unexpected ways. He loved board games, and he especially loved a Canadian game called crokinole, which is sort of a combination between curling and darts. Not long after his diagnosis, we went over to our good friends Antje and Katherine's house for dinner, and he brought the crokinole board over. My mind was still in shock from the diagnosis and it was hard to process anything else, but it made me happy to see him enjoying a moment of normalcy and fun with his friends. Last ...

When Scott was undergoing cancer treatment, he made a Spotify playlist called "Cancer and Me." I couldn't listen to it much while he was sick or in the months after he passed because it still felt too raw and painful. In the midst of processing Todd's cancer diagnosis, I started listening to Scott's "Cancer and Me" playlist again. Hearing it now, over three years out, brings a sense of comfort and closeness with Scott. Some songs ("Lost in the Supermarket", "These Days") are very familiar, and I have many memories of listening to them with Scott. Other songs ("Someday We'll Linger in the Sun", "Astral Weeks") are new to me, and there's an element of discovering something that Scott liked and possibly brought him comfort as he was facing his own cancer journey.    Scott always enjoyed "indoctrinating" people when it came to introducing them to music, books, movies, and games that he loved. When we ...

I'm late in sharing this, but back in February I attended Rare Disease Week at Capitol Hill , hosted by the EveryLife Foundation for Rare Diseases. I was part of a team of 7 people from 4 states representing the Pheo Para Alliance . Nearly 1,000 rare disease advocates from all 50 states gathered for the legislative conference on February 25 to connect and learn about rare disease legislation and how it impacts patients. The legislative asks this year included: Support Steady and Robust Leadership, Federal Biomedical Research Funding, and Public Health Agencies Support the Reauthorization of the Rare Pediatric Disease Priority Review Voucher Program   Ask Members of Congress to Join the Rare Disease Congressional Caucus   Include the Accelerating Kids’ Access to Care Act (AKACA) The following day, we met with the Congressional representatives or legislative staff for our respective states. Because the 119th Congress was sworn in only a month earlier, this was an excellent oppor...