Congresswoman Jennifer Wexton Retires From Congress, Redefining Advocacy for PSP and Rare Diseases

Congresswoman Jennifer Wexton retired from Congress on January 2, marking the end of a ten-year political career that ended sooner than expected due to a progressive supranuclear palsy (PSP) diagnosis. She leaves a legacy of unwavering advocacy and empowerment for underrepresented groups, most recently the PSP and rare disease communities, but before that numerous others inspired by the stories that she heard from her constituents. Her colleagues will remember her candid and friendly attitude, her willingness to work with both sides of the aisle and her dedication to doing whatever it took to serve at-risk groups. Upon receiving her PSP diagnosis, one of the first questions she asked her doctor was if she could run for reelection. He responded by asking, “why would you want to?” Aside from being a sobering moment, Wexton had numerous reasons that she could give him. She never stopped being a fighter.

Despite growing up just outside of Washington DC, Wexton never envisioned herself in politics. She was a successful lawyer for many years before eventually entering the political field for the opportunity to help people on a larger scale. She won a state Senate special election in 2014 and arrived in Richmond as a bright-eyed legislator, in the minority as a woman but a steadfast advocate for victims of rape and sexual assault. A few years later, she announced her campaign for the House seat in Virginia’s 10th Congressional District. She won the seat in 2018, becoming the first Democrat to represent the district since 1981.

Wexton announced her PSP diagnosis in September 2023, describing it as “Parkinson’s on steroids,” and expressed heartbreak over not seeking reelection and having to step away from serving her community. She nonetheless made the most of her final year in office. Her diagnosis came at the same time that the National Plan to End Parkinson’s Act, the first-ever federal legislation dedicated to ending Parkinson’s disease and related conditions including PSP, CBD and MSA, was under consideration in the House. Wexton effectively advocated and helped pass the bill through the House with a vote of 407 to 9 with a new name of the “Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act.” She rode that momentum into the new year with a powerful PSP Awareness Month campaign in May 2024, rallying over 100 members of Congress to recognize May as PSP Awareness Month and included posts from numerous colleagues on social media wearing pins that said “PSP Awareness” with the hummingbird logo, showing support and sharing facts on PSP.

Not long after, the Senate unanimously passed the National Plan to End Parkinson’s Act, which was signed into law by President Joe Biden in July 2024. In Wexton’s farewell speech on the House floor, she calls this moment one of her “proudest moments in Congress” that will “go a long way toward improving and saving lives.”

Determined to continue her work, Wexton made history when she became the first person to deliver a speech on the House floor via a voice cloned by artificial intelligence (AI). It became difficult for Wexton to speak as her speech symptoms progressed, yet she still had so much that she wanted to accomplish in her final term. In May, she began using an assistive text-to-speech device in Congress. By August, she upgraded to an AI-generated voice, created from a collection of her past speeches, that sounded more natural and human-like. This was a landmark moment for the disabled community beyond just those living with PSP. The technology offered a sense of normalcy and a world of new possibilities for individuals with speech impairments, one that will become increasingly accessible as it continues to advance. Justin McCartney, Communications Director and a Wexton staffer since 2018, says that the team’s main goal in finding an assistive speech device was her urgent desire to continue doing her job, which many people can relate to.

"It means a lot to see someone like her with the platform she has continuing to do everything she can to live as normally as she can,” McCartney said.

McCartney says that there were some growing pains in adjusting to working life with her condition, particularly as some colleagues mistook her physical decline for cognitive decline. Their messaging has focused not just on what PSP is, but everything that it is not.

“There's no getting around the toll it's taken on her,” McCartney said. “I think being out there and being honest about it has helped people become more comfortable with it, and know what to expect and how to approach her.”

He also notes that while there were some awkward encounters, the responses have been overwhelmingly positive, and people have been “willing to put in the work” to help her live as she normally would without this condition. Having the patience and grace to put an ear up, or ask her to type something out or continue cracking jokes are all steps to creating a more inclusive world that do not go unnoticed.

The positive sentiment may also be because these conditions are more common than people think: McCartney says the team has been surprised by how many people living in the 10th district, or members of congress or the media have shared that a relative is affected by PSP.

“We never would have known about them unless she gave that platform for folks to talk about it,” McCartney said.

In just over a year, Wexton and her team have succeeded in raising the profile of PSP on a national scale. And it is no surprise that she plans to continue her advocacy work following her retirement. Expect her to continue utilizing her platform to advocate for the HEALTHY BRAINS Act, which remains under consideration in Congress, as well as for any future legislation addressing atypical parkinsonisms. CurePSP will also be calling on your support to message your local representatives around any relevant legislation, which has already proven to make a difference.

Wexton recognizes that much work remains, but she has already shown the power of individual resilience and collective strength. As she says a bittersweet goodbye to an accomplished career in Congress, she leaves knowing that she has never let her disease define her. She continues living on her own terms and has redefined the possibilities for those affected.