Remembering Scott

While my life has been turned upside down this last month, the need to advocate for medical research and better access to health care does not stop (and if anything, now has greater urgency). Rare Disease Week, organized by the  EveryLife Foundation for Rare Diseases , will take place on Feb 25-26 in Washington, D.C. Last year, over 1,000 rare disease advocates from all 50 states showed up to share our stories and make legislative asks from our elected representatives. Rare disease in the aggregate is not rare - 10% of Americans have a rare disease, about half of whom are children. The issues that patients and families fighting rare disease face are not niche. We all benefit from accelerating the development of new therapies, newborn screening so that children can receive treatment earlier, and fewer hurdles to health care. Registration for Rare Disease Week opens on Jan 7 ( https://everylifefoundation.org/rare.../rare-disease-week/ ). The Pheo Para Alliance will be sending a t...

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...

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...

Last month, we learned that Scott's youngest brother Todd has stage 4 colon cancer. He had surgery in July and started an intensive chemotherapy regimen this week. In addition, we learned this month that Todd's company is shutting down, and he will lose his company's health insurance and disability benefits at the end of this year. When Scott was diagnosed with cancer, people often asked how they could help. We struggled with this, as we both had a hard time asking for help. Eventually, I came to accept that letting people help was a gift for them, just as taking care of Scott was a gift for me. I have started a GoFundMe campaign to support Todd and his family as he begins cancer treatments and they navigate the next steps. If Scott or I have done anything good or even mildly helpful in your life, please donate to help his brother and his family. Any gift, large or small, will do good in their lives.   The response to the campaign has already been so heartwarming. For thos...

The first year was a numbing fog of grief, the second year lifted the fog and revealed with brutal clarity what lay ahead, and the third year was one of unexpected possibilities and experiences in this brave new life. In December, I went on my first "solo" travel experience. While I prefer planning my own trips, I decided to go on a tour so I could travel with people but not be responsible for anyone. I went to Costa Rica for a week and had a wonderful time - I saw wildlife in the jungles and waters of Tortuguero, whitewater rafted on the Sarapiqui River, and ziplined through the cloud forest of Monteverde. I had never gone ziplining before and thought I might be nervous, especially since the cloud forest was particularly rainy and windy that day and the trees whipped all around us. But for some reason I felt uncharacteristically calm about it. As I sailed through the clouds, I looked down and saw the tree tops emerging through the mist. I thought of Scott, and how much he wo...

Federally funded scientific research is vital for developing new medical treatments such as the gene-editing treatment described in this NYT article , especially for rare diseases and cancers. Drastic cuts in research funding will slow the discovery and development of new treatments. Please remember this when you contact or vote for your Congressional representatives.   "More than 30 million people in the United States have one of more than 7,000 rare genetic diseases. Most are so rare that no company is willing to spend years developing a gene therapy that so few people would need.   But KJ’s treatment — which built on decades of federally funded research — offers a new path for companies to develop personalized treatments without going through years of expensive development and testing."   "It eventually could also be used for more common genetic disorders like sickle cell disease, cystic fibrosis, Huntington’s disease and muscular dystrophy."   "The research...

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...

Happy to attend this year’s Pheo Para Alliance gala, my first time as a member of the Board of Directors. Two years ago I attended for the first time on my own, still in a haze of grief but I was glad to meet this amazing community. I also got to meet Mark Twain and his charming wife and eldest daughter. He was a lot taller and more into cats than I expected.