Remembering Scott

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.      

"It is the impermanent nature of human existence which throws us into the depths of our most authentic lives. As it turns out, there is no greater motivation for leaning into loving awareness than knowing everything ends."  - Frances Bean Cobain, on the 30th anniversary of Kurt Cobain's death "Grief is weird."   - A friend It's often said among widow(er)s that the second year is harder than the first. While that wasn't the case for me, there were times when the second year was brutal. The initial shock and numbness have gone, and the world goes on around you. My health scare last fall, which turned out to be fine, left me feeling vulnerable and shaken. Even as fleeting moments of happiness crept back in, the reality that life continues on without Scott remains surreal and jarring. This spring has been beautiful. I tried to forget the specific dates of Scott's last days in the hospital and not relive them as the signs of spring emerged ...

This week, I joined 800 people from all 50 states for Rare Disease Week at Capitol Hill ( https://everylifefoundation.org/rare.../rare-disease-week/ ) to meet with our representatives in Congress and advocate for legislation to improve access to treatments for rare diseases. Before today, I had never met with my Congressional representatives or their staff. Part of my motivation comes from what Scott and I went through when we realized how few effective treatments there were for pheochromocytoma/paraganglioma (pheo/para), his rare neuroendocrine cancer. Facing that reality, and seeing Scott realize it, is something that I can never forget. This is a common issue for people battling rare diseases. About 10% of the U.S. population has a rare disease, and less than 5% of rare diseases have an FDA-approved treatment. The only FDA-approved treatment for metastatic pheo/para, Azedra, was developed under the Orphan Drug designation but was recently discontinued by its manufacturer Lantheus du...

When I re-read my 18 month post, I am struck by how well I thought I was doing, and also that I had no idea what was coming next. At 18 months, I was mostly done with my house projects, getting involved in new projects that I cared about, and feeling the strongest (although still not ever the same) I'd felt since Scott's passing. Then the following month brought me to the darkest point I'd felt since Scott's passing, and I found myself wondering if I had made any progress at all. I had a health scare and was called back for follow-up scans. I knew that it would likely be fine, but the week-long wait between my initial and follow-up scan brought back traumatic memories of when Scott was getting his scans and diagnosis. I also felt terribly vulnerable when faced with the possibility of having a health crisis. I didn't have to imagine what battling cancer would be like. I already knew. I saw firsthand the devastation of the diagnosis on the patient and family, the prog...

  18 months after losing Scott, I am still processing the trauma of his diagnosis and realizing how few effective treatments there were for him and feeling completely helpless to stop his disease progression. Last August, the company that manufactures the only FDA approved treatment for metastatic and unresectable pheo/paras announced that it would cease production due to lack of profitability. To remove one of the already few treatment options (and the only one that was FDA approved) is devastating news for the pheo/para community. Scott was able to get Azedra, and while it ultimately did not have the hoped for outcome, we were thankful that it was an option for us at the time. I've since joined the Pheo Para Alliance's Advocacy Task Force to look at expanding treatment options for patients. There is hope for better treatments in the years to come, but that will not help the patients who are in need of treatment now. I was happy to be able to moderate a panel with medical expe...

In honor of Scott's "birthday season," I am launching a fundraiser for the Pheo Para Alliance, which supports patients and families battling the rare cancer that Scott had. The night that Scott and I realized how few effective treatment options there were for pheo/paras because of how rare it is, and how bleak the prognosis was, was one of the darkest moments of my life. Nobody should have to go through that, and nobody should have to feel alone when they find themselves on that journey. The Pheo Para Alliance provides excellent information and resources for patients and caregivers, including their Centers of Excellence program which helps patients identify the nearest hospitals that specialize in treating this rare cancer. They provide a supportive community for patients and families and connect them with researchers and medical providers. They do all this with extremely limited funding, with a team of dedicated and resourceful volunteers whom I've gott...