The Myositis Association announces its 2023 Patient Ambassador Award recipient is Grammy-winning musician Peter Frampton. This award is presented to a member of the myositis community who has demonstrated extraordinary effort and success raising awareness of myositis diseases within the larger community, raising funds to support TMA and its educational mission, and/or supporting legislative advocacy initiatives for rare diseases, including myositis.
Since announcing his diagnosis of inclusion body myositis (IBM) in 2019, Mr. Frampton has been actively raising awareness of myositis, a group of rare muscle diseases that cause severe weakness, fatigue, and disability. With his indominable spirit, he is also inspiring others with myositis to live their best life, regardless of their physical limitations.
Mr. Frampton is also 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 appreciates Mr. Frampton’s honesty in sharing his story publicly and his message of inspiration and hope in the face of this progressive, disabling disease. They also appreciate the several times he has provided this motivational messaging directly to those who live with myositis through video presentations for TMA conferences and fundraising events.
“Peter Frampton provides inspiration and hope to the thousands of myositis patients across the country,” says John McClun, former chair of TMA’s Board of Directors and an IBM patient himself. “His message—’It’s not life threatening, it’s life changing’—is a most powerful antidote for the fear and loss experienced by those who live with this disabling condition that has no treatment and no cure.”
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. The awareness that Mr. Frampton is bringing is especially welcome at this important time.
Mr. Frampton will be presented the award in person during the annual Heroes in the Fight Awards Ceremony in conjunction with TMA’s Annual Patient Conference in San Diego, CA September 7-10.
