Introducing a Bill to the House Floor Despite Her Diagnosis, Congresswoman Jennifer Wexton Continues Shifting the Narrative Surrounding Rare Diseases

May 10, 2024 Courtney Malburg

The constituents of Virginia’s 10th district have a tenacious and unwavering advocate in Congress – and she has progressive supranuclear palsy (PSP).

In September 2023, Congresswoman Jennifer Wexton was diagnosed with PSP, but the diagnosis hasn’t stopped her from excelling in her role as Congresswoman and fierce advocate for those with PSP. This week, she introduced a bill on the House floor, but it wasn’t only the content of the bill that inspired her colleagues, it was also how she did it: she showed up to the podium with an assistive text-to-speech device.

Using the assistive device, Rep. Wexton addressed her colleagues, remarking that “PSP makes it very difficult for me to speak, and I use an assistive app so that you and our colleagues can understand me.” She then introduced her bill and it passed with an overwhelming majority on the House floor.

Symptom progression significantly impacts a person’s sense of self and the way they’ve operated for so long, and it equally impacts how other people perceive the person with the diagnosis. It can create a shift in who they are, what they are good at and what they enjoy doing — and it’s amazing when people push through and adapt to changes in their mind and body. Congresswoman Wexton isn’t allowing the physical loss of her voice to affect the metaphorical voice she has within the federal government.

Since her diagnosis, Rep. Wexton has been very vocal and instrumental in raising awareness of PSP. She hasn’t hidden her disease progression from her constituents or her colleagues, continually providing an example of what true perseverance looks like in the face of PSP.

The story of Rep. Wexton’s use of an assistive device earlier this week turned a public eye toward her unique story and has since gone viral. Her influence moved right past the Senate and into the White House: Vice President Kamala Harris co-signed her bravery on the social media site 'X."

On Thursday, PEOPLE released an interview with Rep. Wexton. She told PEOPLE that “the most difficult thing is not being able to be understood as much as I’d like to be or as much as I used to be, especially as a former trial attorney and now a politician." In the interview, Wexton is candid about the quick progression of her symptoms and expresses the frustration and isolation she has experienced since their onset. Other major news outlets such as NPR, BBC and the Washington Post are also reporting on her persistence in pushing back on symptoms and her honesty about how PSP affects those who are diagnosed.

In just a few days, Rep. Wexton has spread awareness of PSP on a monumental scale. We hope that Congresswoman Wexton’s efforts turn more people towards knowing what PSP is and understanding what those diagnosed experience. We at CurePSP are grateful for Rep. Wexton’s bravery in finding ways to combat her symptoms and advocating for not only the constituents in Virginia’s 10th district, but for everyone with and affected by PSP, CBD and MSA.