Remembering Scott

A deeply heartfelt thanks to everyone who donated to this year's Pheo Para Alliance fundraiser. Between the Facebook, Instagram, and my blog fundraisers, we raised $1,400, and I was happy to donate an additional $1,000 in matching funds to support pheo/para patients and families. Scott's birthday yesterday hit harder than I expected. While I've come a long way in the past year and have been happier than I've been in a long time, the waves of grief can still be difficult to predict. I was touched by the many messages of love and remembrance yesterday, and knowing that Scott is still present in our hearts. I've also seen dear friends battling cancer this year, for themselves or for their loved ones. My hope is that one day, better treatments and advances in research will mean that people won't have to face the awful cancer journey that we once did. In the meantime, I'll do my best to fulfill the promise that I made to Scott by living the best life that I can, ...

In memory of Scott's birthday season, I am starting my annual fundraiser to benefit the Pheo Para Alliance (PPA). This year, I joined the Pheo Para Alliance's Board of Directors and have seen firsthand how the Pheo Para Alliance provides valuable information and resources to patients and families. This includes the Pheo Para Center of Excellence Program, which allows patients to find hospitals that are experienced in treating pheo/paras (critical when dealing with a rare disease), as well as virtual and in-person seminars with the world's leading experts on the latest research and treatments. This year was also the first time that I went to Capitol Hill on behalf of the Pheo Para Alliance to advocate for rare disease legislation with our Congressional representatives. While it's easy to be cynical and think that nothing gets done in Congress, rare disease legislation is one of the few remaining issues that still gets bipartisan support. The RARE Act ( https://matsui.hou...