On June 11 & 12, 2025, 16 USH Champions from 12 states gathered in Washington, DC, for USH on Capitol Hill, a two-day effort focused on meeting with elected representatives to advocate for $50,000,000 in funding for U.S.H.E.R. research program to be added to the FY2026 budget. This money would be used to fund up to three clinical trials that would focus on finding cures and treatments for vision loss related to Usher syndrome, with the goal of preventing vision loss for younger people with Usher, and restoring vision for those with a more progressed loss.
The team is not new to advocacy. The Usher Syndrome Coalition itself has been going to the Capitol since 2013, and the group has made a lot of headway with their efforts over the years.
This was my first trip, however, and I wasn’t sure what to expect. I was quite nervous. It’s no secret that the current proposed budget reconciliation puts a lot of valuable programs on the chopping block, so as a newbie on this trip, that weighed heavily on me - that we would have our work cut out for us in terms of telling our stories, making our ask, and providing the insight and data to support the necessity of our ask. This would indeed be the proverbial “marathon, not a sprint.”
Even if you like running - and I do! - I think we’d all have preferred a 50-yard dash to focusing on the long haul. But the USH Champions are nothing if not persistent and tough, and the team was not dissuaded.
Over the course of two days, we had meetings with staffers from the offices of over 35 Members of Congress. These meetings had been scheduled for us ahead of time, and we were each given a folder with our schedules, a helpful Usher syndrome infographic (helpful for people like me who can never remember statistics!), and copies of the community sign-on letter. We were able to leave materials behind at each meeting, with the plan to follow up via email with additional information.
There’s no shortage of things going on in DC these days, and our various meetings looked different. For example, the Florida members of the USHfam attended a mixer-style event called “Mornings with Moody,” where they could talk to Senator Moody’s staffers and were able to meet briefly with the Senator as well. My second meeting took place in a hallway because my Senator’s office was busy with another meeting taking place in the entryway. We were grateful for the meetings - in whatever format, however they looked - because, bare minimum, each meeting meant that whoever we met with would walk away knowing a bit more about Usher syndrome than they did before our meeting began.
By and large, the meetings went well. I had a moment during my first meeting that left me feeling deflated, but ultimately, I felt better prepared for my next meetings because of the challenges of the first. And while I’d like to say I didn’t let it get to me, I most certainly did. The thing about advocating for a cause that you are so passionate about (in my case, I have USH2A, so this impacts me directly) is that it’s easy to take things personally, even if it’s the nature of the advocacy beast. I didn’t expect everyone we met with to immediately commit to prioritizing these funds in the budget, but I did expect each person to acknowledge the validity of the ask and our experiences.
There’s a reason I don’t have a career in politics. I’m sensitive, and my feelings are hurt easily. That first meeting got to me - and I made a joke of it for the remainder of our two days, because that was easier than acknowledging the hurt I felt at sharing my story and being vulnerable and feeling like a door was closed in my face.
There are some folks who are so good at sharing their story - and I don’t do it as much, or as in-depth as I did over those two days. At the end of the two days, I sat in the airport waiting for my flight, crying as my phone charged in the slowest charging station ever, feeling a vulnerability hangover. Friends assure me that people cry in airports all the time and that likely no one thought anything of it, but as I sat there, I was convinced people were trying to figure out what the heck was wrong with me…but I didn’t know if I cared.
I was diagnosed ten years ago, and the first months following my diagnosis were very hard. During those days, I saw the words deaf and blind and didn’t yet realize the fact that deafness and blindness are both spectrums and that being deafblind wouldn’t necessarily mean that I’d be completely without sight or sound. Over the two days in Washington, DC, I thought of those first few months a lot.
I also thought a lot about what life could look like if treatments for Usher syndrome aren’t found. These are things that - ten years post-diagnosis - I don’t think about very often anymore. Mostly, I just try to live my life to the best of my ability and just try to get through each day, week, month…while I’m aware of my disabilities, I don’t usually give it a starring role in my day-to-day life. It’s not an effective way for me to function, as confirmed by the sadness I felt when I made it to the airport on Thursday.
There’s an importance to sharing our stories. The emotional impact of doing so is very real, though.
After being home for several days, the fog lifted. I wrote my Senators and Congressman thank you notes, because I appreciate that members of their teams took the time to hear us out. I will need to make a point to visit them locally and build those relationships with them here at home - something I’d always heard that we, as constituents, could do, but had felt intimidated about before this trip.
If you are a member of the USH community, there are things you can do at home even if you weren’t in DC:
- Contact your elected officials. Not sure who yours are? Visit this link to Find Your Members. Not sure what to say when you call? View a suggested script here.
- In the spirit of marathons, not sprints, we all can begin our training runs. No need to lace up your sneakers. Your training run can be stopping by your local district office once per quarter, and touching base by phone or email monthly. I am told that there are benefits in regularly reaching out and building those relationships, and I am committed to trying (especially since I now have staffer contact information, whereas before I was just leaving voice mails for my Senators - along with everyone else from the state of Michigan).
- Interested in joining us in 2026? Sign up to be an USH Champion
- Want to support USH Champions for future advocacy trips? Donate here.
