- Issue 2From Awareness to PartnershipPublished · read it
- Issue 3Origins — with Penney CowanPublished · read it
- Issue 4Awareness That Moves ResearchYou are here
- Issue 5Awareness Isn’t Action
- Issue 6The Ecosystem of Observances
- Issue 7Carrying September Forward
Six issues this month, numbered straight on. Issue 1 came out in June; Issue 8 follows in the fall.
This issue’s focus — Awareness That Moves Research. Awareness is a ribbon until it changes what gets studied. This issue follows the road from being seen to being counted — from Cynthia Toussaint and John Garrett’s forty-six years, to a researcher in St. Louis who learned to write the questions with people with pain instead of about them, to the Camden Coalition handing governance to the people it serves.
September is also National Sickle Cell Awareness Month, designated by Congress in 1983. Sickle cell disease is a pain condition at its core — sudden pain crises in childhood that often settle into chronic pain in adulthood — and for decades it drew a fraction of the research funding its burden warranted, in a community that is predominantly Black. Advocates kept the disease visible until the science followed: NIH launched its Cure Sickle Cell Initiative in 2018, and in December 2023 the FDA approved the first gene therapies for the disease. That arc is this issue’s theme in miniature — awareness, sustained long enough, moves research.
Awareness That Moves Research — that’s this issue’s frame, and every piece tests it. Cynthia Toussaint lost dance to chronic pain at twenty-one and built For Grace from the wreckage; John Garrett, forty-six years beside her, learned that staying beats fixing. Sharon Waldrop turned a brochure thrown across an exam room into a support group that has met every month since 1997, and an awareness day now past its 25th year. Our field report follows the Camden Coalition, which answered its own hardest research result by giving people with lived experience real governance. And our reading guide turns awareness into a skill: reading the research about your own life.
This issue is also the first to do what PWLE Voices set out to do: sit down with one person with lived experience and one researcher. Katie Holzer, a clinical social worker and pain researcher in St. Louis, tells what it took to bring people with pain onto her team from the first meeting on, and what her team got wrong the first time. She wants engagement taught to new researchers as the normal way to work. The rule, not the exception.
Ribbons fade in October. These stories are what happens when awareness gets to work.
Welcome to Issue 4.
— Tom Norris, Editor
Spotlight
The Legs of the Operation
Cynthia spent her life on a stage. John never planned to be a caregiver. Forty-six years later they are still here — and still teaching the rest of us what lived experience, and care, actually look like.
Cynthia spotted John across an opening-night party and told her girlfriends, “Who is that fox? I’m going to marry him.” Then she could not get out a single word. He took four months to call. This issue’s spotlight is the story of a dancer who lost her instrument to chronic pain at twenty-one — and the man who spent years believing it was his job to fix her, before he learned the harder thing: that staying beats fixing. It runs through thirteen and a half years without a diagnosis, the abuse Cynthia met in exam rooms, and the foundation she built from the wreckage. The person who lives the pain is the expert. So, in a different chair, is the one who loves her.
Spotlight
The Rule, Not the Exception
Katie Holzer did not plan to study pain. A colleague asked her to measure it, and one added question changed the direction of her work.
She is a clinical social worker and a pain researcher at Washington University in St. Louis, and a first author on the 2024 IMMPACT recommendations for engaging people with pain as partners in clinical trials. In this conversation she talks about the first meeting that went wrong, the patient partner who asked not to be called on, the acronyms that shut people out, and the one thing she will not ask a partner about. She wants engagement taught to new researchers as the normal way to work. “If it’s the rule and not the exception, we’ll do it better.”
Meet a Fellow PWLE
Getting to Know Sharon Waldrop
From a brochure thrown across an exam room to a support group that’s met every month since 1997.
Sharon Waldrop was 24 when a doctor diagnosed her fibromyalgia, handed her a brochure, and left the room. Nearly thirty years later she leads the Fibromyalgia Association, the awareness day it founded in 2001, a podcast and CME programs that teaches doctors what that doctor never learned. In this issue, Sharon talks about the first night seventy strangers showed up to her new support group, why “one percent better” is her whole philosophy, and the silver lining she never expected.
Tools & Resources
Reading a Study Like It’s About You
A free tool walks you through a research paper question by question — because when the study is about your condition, you deserve to read it for yourself.
“Significant” does not mean large, and it does not mean meaningful. When a research team hands you a draft paper — or a headline announces a breakthrough for your condition — you can rely on someone else’s summary, or you can read the study yourself. This guide walks you through Understanding Health Research, a free University of Glasgow tool that interviews you about any paper, and adds the three questions a PWLE should always bring: would I have been in this study, did they measure what matters, and how big is the difference really.
Field Report
Engagement Gets You a Seat. Empowerment Gets You a Vote.
The Camden Coalition answered its own hardest research result by handing more power to the people it serves.
In 2020, a randomized trial found the famous “hotspotting” program didn’t cut hospital readmissions. The Coalition published the result and went deeper — seating people with lived experience on its Community Advisory Committee and its Board of Trustees, compensating both, and building the National Consumer Scholars program and Amplify, its consumer voices bureau. Our editor — a stipended Consumer Scholar himself, with a disclosure up top — reports on the climb from engagement to empowerment, and on the October sessions in Oakland where he’ll carry that argument. The piece also draws a line the field keeps blurring: being engaged in your own care is not the same thing as shaping an organization’s decisions.
Get Involved
Open Calls for PWLEs
Three places your experience is being asked for — with an honest note on the cost and the timing of each.
Tell NIH what you want to hear after a study ends — comments due October 26, 2026
On August 27, 2026, NIH published a draft policy that would require researchers to share summary results, in plain language, with the people who took part. It is open for comment now. Three of the questions are addressed to participants rather than researchers: what you find valuable in a summary, how you would want to receive it, and what worries you about receiving it. A paragraph counts as a comment. You may submit anonymously. Note that responses may be posted publicly afterward without redaction, so write what you are willing to have read. Comment on the draft policy — Notice NOT-OD-26-113.
Putting Care at the Center 2026 — October 14–16, Oakland, California
The Camden Coalition’s annual conference, co-hosted this year by Kaiser Permanente at the Oakland Marriott City Center — the same gathering our Stay Informed piece reports from. It takes lived experience seriously enough to price for it: reduced registration is available for consumers and family caregivers, for community health workers, and for people at small non-profits and government agencies. Early bird pricing closed July 31, and the Coalition asks anyone who wants to attend but cannot afford it to write and say so rather than stay home. camdenhealth.org → Annual conference
Become a PCORI Merit Reviewer — open now, rolling
PCORI seats people with lived experience on the panels that score research applications, with weight equal to the scientists in the room. Reviewers are trained and the work is compensated. Applications are accepted year-round and you hear back in about a week. Two things worth knowing before you apply: the panel meeting is in person, and PCORI makes accommodations where a disability affects your ability to take part — ask for what you need. Applicants must live in North America. pcori.org → Become a Merit Reviewer
Know of an open seat for a PWLE? Tell us at editorpwlevoices@gmail.com.
A note on how I choose these: I am a National Consumer Scholar with the Camden Coalition, a role that carries a stipend, and I will be taking part in two sessions at the October conference listed above. I also serve on PCORI’s Patient Engagement Advisory Panel and as a PCORI Merit Reviewer, both paid by honorarium, and as a PCORI Ambassador, which is volunteer. Two of the three openings on this card are organizations I am on the books with. I list them because they are real and open to any person with lived experience — not because of those roles — and I would rather say that plainly than leave you to wonder. Every date here was checked against the primary source on August 29, 2026, and the NIH deadline again on September 3. Confirm at the linked page before you rely on it. — Tom
Share your story or your reaction. Reach the editor at editorpwlevoices@gmail.com. We read every message.
Subscribe. Email editorpwlevoices@gmail.com with “Subscribe” in the subject line. Every issue also stays free to read at chronicpainla.com — no account, no paywall, no advertising.
Tell us we got something wrong. If a date has moved, a link has died, or a fact does not hold up, write to us. We would rather print a correction than leave an error standing.
Suggest a featured PWLE. Know an advocate whose story belongs in a future issue? Tell us.
Featured pieces and contributor pieces are reviewed and approved by the named contributors before publication — and every contributor is offered the whole issue to edit, not just their own piece. Final editorial responsibility rests with the editor. This issue carries a first-person disclosure at the top of the Camden Coalition field report, the Sharon Waldrop profile, and the Katie Holzer researcher spotlight. The Camden Coalition reviewed the field report for accuracy before publication.
Featured — The Legs of the Operation
chronicpainla.com/the-legs-of-the-operation
Researcher Spotlight — The Rule, Not the Exception
chronicpainla.com/the-rule-not-the-exception
Meet a Fellow PWLE — Getting to Know Sharon Waldrop
chronicpainla.com/getting-to-know-sharon-waldrop
Tools & Resources — Reading a Study Like It’s About You
chronicpainla.com/reading-a-study-like-its-about-you
Research Update — Engagement Gets You a Seat. Empowerment Gets You a Vote.
chronicpainla.com/engagement-gets-you-a-seat
Open Calls — Where Your Voice Is Needed Now — on this page, above.
chronicpainla.com/issue-4