Remembering Scott

The day after the legislative conference, 800 rare disease advocates from across the U.S. descended on Capitol Hill to meet with our Congressional representatives' offices. It is always moving to hear the stories of patients fighting for years to get to the correct diagnosis or the right treatment, or any treatment at all. Half of all rare disease patients are children, and it was heartbreaking and inspiring to hear stories from the parents or the children themselves, battling for their lives with grit and eloquence.          Meeting with Rep. Sarah Elfreth's office This year I joined the Maryland delegation to meet with the legislative staff for Rep. Sarah Elfreth, Rep. Glenn Ivey, and Sen. Angela Alsobrooks. I ended up leading two of the meetings, and our asks included: 1) Support funding for FDA's newly established Rare Disease Innovation Hub to connect experts and industry and accelerate rare disease treatment development and approvals 2) Support the Access...

Five weeks out from brain surgery, I wasn't sure if I would be able to attend Rare Disease Week this year. My energy level is not yet back to 100%. Because this is a cause that is close to my heart, I decided to attend but prioritized my time and energy on the legislative conference and meeting with my representatives' offices, and I'm glad I did. It was wonderful catching up with my fellow rare disease advocates, and Rare Disease Week feels like a reunion with friends, especially with my amazing Pheo Para Alliance team. Phearless Pheo Para Advocates Last year, the vibe at the rare disease legislative conference felt uncertain but determined. We were facing cuts to rare disease research and Medicaid, and key pieces of rare disease legislation were on the brink of being passed but then pulled at the last minute due to political crossfire. This year, we had several major victories to celebrate. Nearly all of our recent rare disease legislative asks were passed and signed in...

Converted my pigtails into a Princess Leia look for tonight because why not.

On Wednesday I went to Johns Hopkins Hospital to have brain surgery to remove my tumor. I've tried a few new looks during my hospital stay (see photos). My first stop was to get a brain wand MRI and place white markers on my head for neuronavigation in preparation for surgery. After that I had a few hours before surgery check-in.    Trying a new look with fiducial markers for neuronavigation   Cool 3D model of my brain, with tumor shown in red Returning to the hospital was emotionally difficult for both my sister and me, because the last time we were there was Scott's final days in the hospital. So I relived some memories as I walked down the hallways, and I took the indoor route that I remembered to go visit Big Jesus, located under the Johns Hopkins dome.  Return to Big Jesus  I had stepped before Big Jesus first as a visitor when my sister was going there for medical school, then as a caregiver, and now as a patient. I looked up at him and prayed ...

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...