Congress Rallies Around Colleague Jennifer Wexton as She Leads 100 Members in Bipartisan Resolution to Recognize May as PSP Awareness Month

May 24, 2024 Oscar Sullivan

Congresswoman Jennifer Wexton does not want sympathy. She wants the public to learn more about progressive supranuclear palsy (PSP), the disease affecting her and over 30,000 other Americans. She made that clear in her speech on the House Floor on May 22 introducing a bipartisan resolution to officially recognize May as “Progressive Supranuclear Palsy (PSP) Awareness Month,” punctuating a Digital Day of Action for her PSP Awareness Month campaign.

"I share the personal details of my journey with PSP not because I want to be told how inspiring I am or for you to feel sorry for me,” Rep. Wexton said. “I speak about what I’m going through because there are tens of thousands of other Americans out there who are fighting the same battles I am and many of their loved ones, colleagues and neighbors are having similar struggles with how to deal with the rapid and scary changes happening to the person they know and love.”

Rep. Wexton delivered the moving speech with the assistance of a text-to-speech device, which she debuted on the House floor earlier this May, and has become a symbol for the vital soul still present within a person diagnosed. She noted that she was still active in a group chat with her female colleagues, and her vast network was on display throughout the day as she took to social media urging people to post and share content that spreads awareness around the urgent need to find treatments and a cure. A steady stream of posts came in throughout the day on the social media site “X” from friends and colleagues wearing pins that said “PSP Awareness” with the hummingbird logo, showing support and sharing facts on PSP.

The posts from Rep. Wexton’s colleagues in the House of Representatives is the most concerted effort from members of Congress to amplify the impacts of PSP. Rep. Wexton’s leadership created this momentum and continued advocacy in Congress is essential to furthering her work to support those living with PSP and ultimately to find a cure. The posts all shared an urgency familiar to those living with or caring for these rare diseases, and made for a special day of awareness. Perhaps the most impactful post came on Wednesday evening, when Representative and former House Speaker Nancy Pelosi shared a photo wearing the pin and showing solidarity with her friend and colleague. The post received over 100,000 views in less than twenty-four hours.

The bipartisan resolution to officially recognize May as PSP Awareness Month has already received over 100 cosponsors from both sides of the aisle, a record number of original cosponsors for a bill by her team. It is the latest milestone for Rep. Wexton and her team that already includes the momentous passage of the Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act through the House and Senate, as well as the designation of May as Progressive Supranuclear Palsy Month of Awareness in Virginia. Kristophe Diaz, Executive Director and Chief Science Officer of CurePSP, credits Rep. Wexton with changing the perception of those affected by PSP in a way that has led to change.

“Every day, we hear from families grappling with the challenges of PSP. Despite affecting as many people as ALS (Amyotrophic Lateral Sclerosis), PSP remains largely unknown, often leading to misdiagnosis and a lack of support for those affected. Before receiving a diagnosis, people face uncertainty and confusion about their symptoms,” Dr. Diaz said. “This bipartisan resolution, driven by Congresswoman Wexton, is critical to changing this narrative. By raising awareness of PSP, we can ensure faster diagnoses, help families sooner and enable patients to participate in research and clinical trials earlier. The collaborative effort behind this resolution and Wexton's heroic leadership and courage inspire hope and action in the PSP community.”

As Rep. Wexton continues adjusting to the progressive symptoms of PSP, she emphasizes her dedication to doing what she has always done, now for a community that she will forever be a champion of.

“I’ve spent my career uplifting the stories of those in need,” Rep. Wexton said. “I am committed to continuing that work now on behalf of the PSP community and making the most of this platform for as long as I am able."