Tag Archives: Jennifer Wexton

The atypicals go to Washington

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Well, this week started in an interesting and I hope productive way.  CurePSP arranged for some of its Board members, including myself, to meet with staff of two U.S. Senators and six members of the House on October 27, 2025.  The goals were not to support any pending legislation, but to:

  • Raise awareness in Congress about PSP, MSA and CBD (the three leading “atypical Parkinsonian disorders”),
  • Emphasize the importance of maintaining and expanding Federal involvement in research and care for PSP, MSA and CBD.   
  • Encourage support for the upcoming recommendations of the advisory council established under 2004’s National Plan to End Parkinson’s Act (NPEPA).  That act created a group from multiple stakeholders to coordinate and advise the Federal Government on Parkinson’s research.  Thanks in part to CurePSP’s lobbying efforts, the NPEPA covers not only PD, but also PSP, MSA and CBD.

We split into two teams of six, each of which met with a legislative aide for one Senator and three Representatives.  Each 30-minute meeting included one neurologist (the other being Dr. Alex Pantelyat, a CurePSP Board Member from Johns Hopkins University), three or four other CurePSP Board members, and one person from Faegre Drinker, a prominent law/lobbying firm that is helping CurePSP pro bono.  The overall organizer was Jessica Shurer, CurePSP’s Director of Clinical Affairs and Advocacy.

My team’s four meetings were with staff of Sen. Andy Kim (NJ), Rep. Neal Dunn (FL), Rep. Darin LaHood (IL), and Rep. Troy Balderson (OH).  The other team met with staff of Sen. Eric Schmitt (IN), Rep. Doris Matsui (CA), Rep. Morgan Griffith (VA), and Rep. Diana DeGette (CO).  Of the eight, in case you’re interested, three are Democrats and five are Republicans. 

Each 30-minute meeting included:

  • A quick introduction to the three diseases and how they differ from Parkinson’s,
  • Some personal anecdotes of the difficulties navigated by the patients and their caregivers,
  • Some description of where the research stands right now, and
  • Our hopes and recommendations regarding the role of Congress in the fight.

All the staffers were well-trained, energetic, respectful, gracious, and eager to help.  They asked pertinent questions, took notes, and tried to focus on what’s feasible for their boss to do, either behind the scenes or through formal channels.  No one raised any political issues.

A powerful point of ours came from former Representative Jennifer Wexton of Virginia and NPEPA co-sponsor, who retired last year because of advancing disability from PSP.  She was unable to be part of our meetings but asked Jennifer Shurer to relay the following message to her former colleagues on Capitol Hill: “If PSP happened to me, it could happen to you or anyone.”

Was this all just political theater?  Maybe to an extent, but that’s how truly meaningful things get started – by grabbing the attention of those in power and educating them on our concerns, even via a junior staffer for a half hour.  We at CurePSP are grateful for the chance to get that ball rolling. 

Sing, o muse!

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You’ll recall from my 7/4/24 post that Rep. Jennifer Wexton of Virginia announced last year that she has PSP.  Below is a new press release from her office.  My point relates to its final paragraph.

Wexton Marks Disability Pride Month on House Floor Using New AI Voice Model

Washington, July 25, 2024

Washington, DC — Today, Congresswoman Jennifer Wexton (D-VA) delivered a speech on the floor of the House of Representatives to recognize Disability Pride Month, celebrated each July. Wexton utilized her new AI voice model for the first time on the House floor to share how she has fought throughout her career for disability rights and accessibility issues, and how that has now become a personal fight for her since her Progressive Supranuclear Palsy (PSP) diagnosis last year.

“I hope that when people see me continuing to do all I can to keep living my life and doing this job I love as best I can, they understand and appreciate the courage, resilience, and spirit that so many Americans of differing abilities demonstrate each and every day. I hope I can be a voice — even an AI voice — for Americans facing accessibility challenges and other disabilities, because too often people only see us for that disability. And in truth we are so much more,” said Wexton.

The AI voice model was created through ElevenLabs, a software company that specializes in developing natural-sounding speech synthesis software using deep learning. The model was generated consensually using a collection of previous public speeches from Rep. Wexton provided by her team. Any additional questions about the ElevenLabs technology can be directed to press@elevenlabs.io.

More than the nominal topic of Disability Pride Month, the text mentions that she used an AI-based speech aid to deliver a speech on the floor of the House.  It used audio recordings of her public speeches before PSP’s dysarthria set in to train the AI software to translate a written text into speech in her own voice, not the electronic, synthetic voice we all recognize as “computer speech.”  This is important because the distinctive timbre of one’s speech provides an important emotional identifier. 

This technique, relying as it does on a prepared, written text, is not suitable for ordinary two-way conversations unless you can type extremely fast. Few people with PSP can do that, even with the help of word-completion software.  Besides, hardly anyone has a collection of old audio clips on which to “train” the AI software that Rep. Wexton used.  An audio bank deliberately created for this purpose in an early stage of illness is one potential solution.

I wanted to review the latest on this topic, mostly to help me advise CurePSP about what sort of programs or research it might support going forward.  So, I consulted my newest muse, ChatGPT.  Here’s what it had to say about voice banking and other solutions for severe dysarthria:

You can bank your own voice for future use in a speech generation app in case you become disabled. Voice banking involves recording a variety of phrases and sentences while your voice is still healthy. These recordings can later be used to create a synthetic version of your voice, allowing speech generation apps to produce speech that sounds like you.

Here are the general steps to bank your voice:

    Choose a Voice Banking Service: Select a service that offers voice banking. Some popular options include VocaliD, Acapela, and ModelTalker.

    Record Phrases: Follow the service’s instructions to record a set of phrases and sentences. The more you record, the better the quality of the synthesized voice.

    Submit Recordings: Upload your recordings to the voice banking service.

    Voice Synthesis: The service will process your recordings and create a synthetic version of your voice.

    Integration with Speech Generation App: Once your synthetic voice is ready, it can be integrated into a speech generation app. This allows you to communicate using your own voice even if you lose the ability to speak naturally.

Voice banking is a proactive step that can significantly improve the quality of life for individuals facing conditions that may affect their ability to speak.

Alternatives to voice banking?

If voice banking is not a suitable option for you, there are several alternatives that can help with communication if you become disabled. Here are a few options:

1. Voice Cloning

Voice cloning uses advanced AI to create a synthetic version of your voice with fewer recordings. Services like Respeecher and Descript can create high-quality voice models from a limited amount of audio data.

2. Text-to-Speech (TTS) with Customization

Text-to-speech technology can be customized with different voices, accents, and tones. Some TTS systems allow you to adjust parameters to make the voice sound closer to your own. Popular TTS engines include:

    Amazon Polly

    Google Text-to-Speech

    Microsoft Azure Speech Service

3. Pre-Recorded Messages

You can record common phrases and sentences that you might need. These recordings can be played back as needed. Devices like the GoTalk series or AAC (Augmentative and Alternative Communication) devices often support this feature.

4. Alternative and Augmentative Communication (AAC) Devices

AAC devices and apps provide various ways to communicate through symbols, text, and synthetic speech. Examples include:

    Tobii Dynavox

    Proloquo2Go

    TouchChat

5. Predictive Text Apps

Predictive text apps can assist in quicker communication by predicting the words and phrases you are likely to use. These apps learn from your typing habits to offer more accurate suggestions. Notable apps include:

    SwiftKey

    Gboard

6. Communication Boards and Books

Low-tech options such as communication boards or books with pictures, symbols, or letters can be very effective, especially in environments where technology might not be available.

7. Eye-Tracking Technology

For individuals with severe physical disabilities, eye-tracking technology allows communication through eye movements. Devices like the Tobii Eye Tracker can be used to control computers and AAC software.

8. Sign Language and Gestures

If you retain some physical ability, learning sign language or using a system of personalized gestures can be an effective way to communicate.

Each of these alternatives offers different advantages depending on your specific needs and circumstances. Exploring these options can help you find the most effective means of communication in the event of disability.

Now back to human me. 

It goes without saying that these solutions have to be tailored to the individual – no easy task considering that the disease itself worsens with time.  Another complication is that many of the techniques require manual dexterity or eye movement control beyond the abilities of many people with PSP.  (It also goes without saying that anything from ChatGPT can be incomplete or even wrong.)

Medicare pays most of the cost of some of these things if there’s a doctor’s prescription. Discuss with a speech pathologist, which you should be doing anyway for general PSP-related speech and swallowing issues.

If you consider me your PSP muse, whose mine? Now I know.

Awareness is key

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The state of Virginia has just enacted a law declaring each May “PSP Month of Awareness.” Former Virginia State Senator and current US Representative Jennifer Wexton announced her diagnosis of PSP in September 2023 and has been working to help spread much-needed public awareness of the disorder. She still has many friends in the state legislature who stepped up to the plate for her and the approximately 20,000 others in the US with PSP.

It may sound like a mere charitable if toothless gesture to honor a respected, ill colleague. But if more doctors, researchers and members of the public were aware of PSP, there would be more rapid diagnosis, faster clinical trial enrollment and more attention from researchers, philanthropists and drug companies. PSP has a slightly greater population prevalence than Lou Gehrig disease (or amyotrophic lateral sclerosis or ALS), which enjoys much greater awareness. Reasons for that are that ALS has been known to neurologists for a century longer (1869 vs 1964), it’s much easier to diagnose (a neuro exam and an EMG), has a more rapid course (averaging three years vs. an average of seven years for PSP), can sometimes affect much younger people than PSP ever affects, and maybe most important, is named after a beloved athlete who famously retired at age 36 and died two years later.

I don’t wish PSP on anyone, but if someone had to get it, I’m glad it was someone with Representative Wexton’s courage, foresight and influence.

Yes, Congress can accomplish something

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Here’s a great step forward: The Energy and Commerce Committee of the US House of Representatives has just approved the “National Plan to End Parkinson’s Act.”  Thanks in part to advocacy by CurePSP and other organizations devoted to the atypical Parkinsonisms, the bill includes not only PD but also PSP, multiple system atrophy, Lewy body dementia, corticobasal degeneration and Parkinson’s dementia. 

For the remaining required approvals, the bill will now proceed to the full House itself, then the Senate, then the President. (I recited that route for my international readers and for my US readers who doodled through civics class.)  Crucially, the bill was passed with full bipartisan support in the committee, which bodes well for its chances the rest of the way.

Here’s video of the committee’s session.

The bill directs the Department of Health and Human Services to create an advisory commission with representation from all relevant Federal agencies and some advocacy and research organizations as well as patients and caregivers.  Each year, the commission would assess the state of research and clinical care and formulate recommendation on how the various relevant Federal agencies could formulate and coordinate further research plans.  It would also interact with similar organizations internationally. A similar bill for Alzheimer’s disease was enacted in 2011 and has been working successfully by all accounts.

The commission would recommend spending levels for the Federal Government to advance these efforts, but the bill provides no funding for the work of the commission itself.  That would have to be absorbed by the existing budget of the Department of HHS.  (This is standard practice when Congress is interested in a specific medical cause.) 

The bill was first taken up by the committee in March, nine months ago.  One of its major advocates has been Congresswoman Jennifer Wexton of Virginia, who was diagnosed with PSP herself last summer and has been working with CurePSP and others to improve awareness of PSP nationally and to raise funding for research.  Here’s a press release from her office.   The lead sponsor of the bill is Congressman Gus Bilirakis of Florida, who has three close relatives with PD, but 167 other House members signed on as co-sponsors.  The Michael J. Fox Foundation has been working tirelessly for the bill.

I know you’ve been waiting for my editorial commentary.  Here it is:  This is great publicity for PSP, and it sure needs it. 

Congresswoman Wexton is the highest-profile celebrity with PSP since Dudley Moore, the British-American comic actor best known for the movies “10” and “Arthur,” announced his diagnosis of PSP in 1998.  His friends organized a star-studded benefit at Carnegie Hall in New York that raised $50,000 for CurePSP but he declined to become an activist in other ways.  (I was his neurologist, and he told me, “I’ll help out, but don’t want to be the poster child for PSP.”) Linda Ronstadt, the popular singer and Rock and Roll Hall of Fame member, announced in 2019 that her longstanding diagnosis of Parkinson’s had been changed to PSP.  She has not yet supported PSP-related activities of which I’m aware.  A few other less-famous celebrities with PSP have advanced awareness and fundraising, and we’re grateful to them and their families.  But when “progressive supranuclear palsy” is mentioned on the floor of the US House of Representatives and included in press releases, that’s rare and valuable publicity.