When an individual goes above and beyond, representing, raising awareness, and contributing financially to the work of The Myositis Association (TMA), it is more than fitting to present them with the Patient Ambassador Award. TMA is excited to announce that the 2023 Patent Ambassador Award is being presented to composer, musician, and beloved American icon, Peter Frampton. The Award is presented to a member of the myositis community whose efforts on behalf of TMA and all people affected by this disease offer hope and inspiration. As he launches his North American Never Say Never Tour, Mr. Frampton embodies the spirit and determination of TMA’s efforts to combat myositis.

What is Myositis?

Myositis is a medical term meaning inflammation of the muscle, but it has come to refer to a disease involving chronic muscle inflammation, often with other symptoms. The disease is rare, difficult to diagnose, and can lead to permanent disability or even death. There is no current cure for myositis, and much research and work needs to be done to reach a consensus on the best course of treatment for the disease. While there is still no treatment for IBM, this is an exciting time in IBM research. Scientists are currently recruiting patients for several clinical trials hoping to find an effective therapy.

An Inspiration and a Critical Resource

Mr. Frampton went public with his diagnosis of inclusion body myositis (IBM) in 2019. Undeterred by the challenge, he continues to tour and record music. Most recently he has launched his North American Never Say Never Tour, which kicked off in June 2023. During his recent tour stop in Clearwater, Florida, Mr. Hampton is quoted as saying, “I’m a person of hope. I’m gonna keep fighting this because my cup is half-full,” he continued, speaking of his current health condition. “This one is called Never Say Never but, maybe there’s a sequel.” (1)

With his indomitable spirit, he is inspiring others with myositis to live their best life, regardless of their physical limitations, and doing his part to combat the disease. Mr. Frampton is using his celebrity to raise much-needed funding for research into the cause and treatment of myositis. He established the Peter Frampton Myositis Research Fund at Johns Hopkins where he is being treated. During his 2019 Farewell Tour, one dollar of every ticket sold, along with proceeds from T-shirt sales, was donated to the fund.

The Myositis Association is deeply grateful for Mr. Frampton’s transparency in publicly recounting his journey and for conveying a potent message of inspiration and hope despite grappling with this advancing, debilitating ailment. Mr. Frampton will be presented the award in person on September 9th during the annual Heroes in the Fight Awards Ceremony in conjunction with TMA’s Annual Patient Conference in San Diego, CA September 7-10. For more information about TMA, and how you can get involved in the fight against myositis, contact us about membership opportunities.


12 comments on “Peter Frampton leads the fight against myositis from front stage”

  1. 1
    Denise Smith on July 26, 2023

    Husband has just been given his IBM diagnosis. Nice to see there is a community that is already on top of trying to find a cure for this……Thank you.

  2. 2
    Denise L Hall on July 29, 2023

    I’ve loved Peter Frampton for 46 years. What a talent and gift he has, but even more than that, what a beautiful human being he is. As a cancer warrior and survivor I see his fight and determination. We need a cure for IBM, and at the very least a promising treatment protocol. If you love Peter, donate!! All my ♥️

  3. 3
    Charlotte Belser on August 5, 2023

    It’s inspiring to see Mr. Frampton fighting as hard as my Husband ,Aaron Belser has for almost 14 years ago when he was finally given his IBM diagnosis. He still fighting but it is getting very difficult. We have made life changing decisions by leaving rainy Seattle and moving to a dry desert climate . We had to install a stairlift on the condo and walk in shower . We have had a seat-lift put in the truck . He recently has gotten a wheelchair, he still try’s to walk and exercise everyday , although it’s an everyday battle and very hard on him he continues the fight with an upbeat attitude and a smile . Thank you Peter Frampton for bringing this terrible disease to the forefront and best wishes on your IBM battle. We may go to your concert at the Palms in Vegas . Thank you again !
    Loving Wife of a I BM diagnosed spouse
    Charlotte Belser

  4. 4
    Julie McCullough on August 11, 2023

    Posters of Peter Frampton hung on the walls of most teen girls bedrooms.
    Not only does he have a beautiful face, but beautiful soul to use his fame to help himself & others with myositis.
    I applaud him for his tenacity in touring & living his life to the fullest!!
    He will have 2 unique legacies!
    Thank you, Peter for your inspiration!!
    I have had dermatomyositis & some scary biomarkers – anti NXP-2 and Pl-7.
    You have to have fortitude to deal with these cruel& challenging muscle diseases.

    1. 5
      Linda Proulx on January 24, 2024

      Hi Julie, I to9 have Dermatomyositis…your comment of “you have had Dermatomyositis” caught my attention. Are you in permanent recession so to speak with no further flares? May I ask how long you have had this. I too have scary markers and don’t respond to the typical treatment..

  5. 6
    Dr Parul Madia on September 5, 2023

    I have polymyositis since 8 years and am 65. Now after 3 flare I am weak. But exercise is my way. Do it as much as I can. Do gardening also. Never going to give up. I can walk slowly. Rising from chair and stairs are difficult. Wishing all myositis people: fight it out!!

    1. 7
      cheryl stock on October 17, 2023

      I was diagnosed with PM in 2007. In 2019 was diagnosed with Interstitial Lung Disease. Had to go on LTD. It’s taken from 2019 to now to be able to return to. the maintenance phase. In flare-up needed a PSW to help with bathing, dressing. During COVID isolated for nearly two years. Was using a walker and wheelchair. When first diagnosed in 2007 was advised not to exercise. Now, exercise is strongly recommended.

      Currently, going to a local aquatic centre for lane swimming and exercise in the heated side of the pool. As well, enjoy gardening and need to get my bulbs in the ground.

      I eat healthy and avoid salt, sugar and processed food. I’m still on 9 mg. of prednisone.

      I love learning and researching now about applying for a DSW when turn 65 in 2024.

      Wishing you all the best and please never give up.


    2. 8
      John Carpemter on February 24, 2024

      Thank you for sharing . Was just now feeling a bit down with my IBM for the first time . I just stumbled onto your post and I already feel a bit more hopeful about my situation .
      Thanks gain , John C

  6. 9
    Christine on November 22, 2023

    I am a recent patient of IBM. Diagnosed at Mayo.
    Symptoms came on slowly, just thought it was my experience, not a fan of the old, or age thing..
    I’m just more experienced.
    I am a widow, doing therapy, staying positive.
    Hope to handle it as best I can.

  7. 10
    Christy on February 11, 2024

    My husband was diagnosed with IBM in 1984 at the age of 27.His symptoms started out with a change in his gate of walking , along with leg pains.At the time we had two young daughters .My husband had two major concerns when he first was diagnosed because of very little was known of IBM . His first major concern was whether IBM could be hereditary and second was what to expect with the advancement of the disease.He continued to work as long as he could.In his case the disease started to effect his strength in his arms and hands.My husband had a very strong faith that someday there would be a cure for this disease.He kept up a very brave fight with this disease until his passing away at age 61.He lead an amazing positive attitude touching so many people in his life making people realize that no matter how many problems they have there are people that have bigger problems and how they learn to handle it with Grace and Strong Faith.This was a gift he gave to his daughters and to everyone he knew.I can say he was my hero . My message for everyone that has IBM or has a loved one that has received the diagnosis of IBM, is to keep fighting keep moving and try to enjoy each day the best they can.Remember ,God is good and there is always hope

  8. 11
    Joseph Peroutka on April 4, 2024

    I have had dermatomyositis since 8 years old. I am now 60. Very difficult because of the crippling effects of Calcinosis Universal that occurred at age 12 years old. Weird thing is their seems to be a cluster of IBM and myositis cases in my area of Omaha Nebraska. I have a hunch that there is an environmental component to these diseases and not just a genetic predisposition. Maps should be made of locations of high occurrence. This may help to see if the hypothesis has any validity.

    1. 12
      Linda Kobert on April 5, 2024

      Joseph, there are people at the NIH and elsewhere who are looking at environmental influences for myositis. They have found some connections, for example with military personnel and IBM and NYC 9/11 first responders and dermatomyositis. Other factors are still being explored.

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