Events this May!
Myositis Awareness Month is May 1-31, when we amplify TMA’s ongoing efforts to inform the public about forms of myositis. You – the individuals and families living with myositis – are the most powerful voice in raising awareness about these rare diseases. Here are some examples of news features, books, and influencers from our community.
TMA Advocates Spread Awareness and Inspiration
Investigative News Series on IBM
11Alive Investigates and NBC affiliates are participating in a national project to raise awareness about inclusion body myositis (IBM) and better understand why veterans believe the disease should be service-connected. Diagnosis Denied is examining how U.S. veterans diagnosed with are often denied VA disability benefits. Through reporting from across the country, the project highlights patterns in denials, gaps in recognition of the disease, and the impact on veterans fighting for care and support.
- Diagnosis Denied: Veterans urge the VA to recognize rare muscle disease IBM as service-related TMA is featured in Diagnosis Denied, a new investigative documentary now streaming free on 10Tampa Bay+ — spotlighting the fight for veterans with IBM to receive VA disability benefits.
- “We’re running out of time”: Veterans Urge VA to Recognize Rare Disease as Service-connected featuring Augie DeAugustinis on WXIA-TV News, Atlanta, GA
- Veterans Push for Faster Access to Benefits interview with investigative reporter Rebecca Lindstrom on WXIA-TV News, Atlanta, GA
- Veterans Battle VA over Rare Muscle Disease They Believe is Tied to Military Service featuring Greg and Lori Rathburn on KGW News, Portland, OR
- Diagnosis Denied: Florida veterans living with rare muscle disease want VA to recognize condition as service-related featuring Dennis McKinney plus Dan and Alicia Lowther on 10 Tampa Bay News, Tampa Bay, FL
- Diagnosis Denied: Fight to get VA to treat rare disease featuring Jim Cressman on 9NEWS, Denver, CO
- Diagnosis Denied: Veteran pushes for change after a 17-year struggle to get benefits featuring Larry Leisher on FirstCoastNews, Jacksonville, FL
- VA reverses denial for Oregon veteran with rare muscle disease following KGW investigation featuring Greg and Lori Rathburn on KGW News, Portland, OR
Media Coverage of TMA Members
- Norfolk woman advocates for earlier diagnosis after years-long battle with rare autoimmune disease featuring Kaniah Gunter on 13NewsNow, Norfolk, VA
- Disc Golf Legend “Jumpin’ Joe” Feidt Raises Awareness for Myositis featuring Joe Feidt on KSTP 5 News, Minneapolis, MN
- Virginia Woman’s Rare Autoimmune Disease Makes Her Allergic to Sun featuring Jennifer Broyden on Inside Edition
- Rare Disease Day featuring Lindsay Guentzel on KSTP 5 News, Minneapolis, MN
- Myositis, a Debilitating Disease: Local Man Raises Awareness through First Pitch Campaign featuring Vance Robinson on KSBY News, San Luis Obispo, CA
- Man Diagnosed with Rare Muscular Disorder Crosses the Cooper to Bring Awareness featuring Chip Galloway on WCSC News, Charleston, SC
- Southwest Florida Myositis Support Group Celebrates Anniversary in Sarasota Herald-Tribune, FL
Blogs, Editorials, and Interviews
- Woman, 24, Reveals Common Symptom that Led to ‘Incurable’ Diagnosis featuring Jennifer Broyden with People Magazine
- She’s Deathly Allergic to the Sun. Here’s How She Gets Through the Day featuring Jennifer Broyden with USA Today
- Let’s Find a Cure for this Debilitating Disease by Nancy Marx Erickson in Baltimore Sun, Baltimore, MD
- Lindsay’s Story: What It’s Like to Live with Myositis by Lindsay Guentzel at Know Rare
- Living with a Rare Muscle Wasting Disease – Inclusion Body Myositis podcast with Jim Mathews on The Medical Maze: Decoding Misunderstood Diseases
- Norfolk Mother Won’t be Victimized by Rare Illness featuring Kaniah Gunter at Health Journal
Clinicians Raising Awareness
- When the Provider Becomes the Patient: A Personal and Clinical Journey with Dermatomyositis by Jen Swisher, PA-C at Hippo Education
- Myositis Awareness Month with Double Lung Transplant Recipient and Author featuring Omni McCluney, PA-C, MMSC, MPH on CW39 News, Houston, TX
- Your Muscle Weakness May Not Just Be a Sign of Aging featuring Drs. Conrad Wiehl and Julie Paik at Wall Street Journal
Books by TMA Members
- Awaken Your Inner Warrior Anthology by Kimberly Branche
- Barriers to Breakthroughs: Rare Disease Journey & Guide by John Muller
- One-Eyed Kings by Jim McTevia
- Playbook of Champions and Volleyball for Milkshakes by Tri Bourne and Travis Mewhirter
- Inclusion Body Myositis: A Guide for Patients by William Tillier
- Living with Myositis: Facts, Feelings, and Future Hopes edited by Jenny Fenton
- Teddy-Bo’s Feeling Tired by Myositis UK
- Myositis and You: A Guide to Juvenile Dermatomyositis for Patients, Families, and Healthcare Providers edited by Lisa G. Rider, et al.
Myositis Influencers
- Jennifer Broyden, living with dermatomyositis (TikTok:@jenninprogress)
- Erica Deasza, living with antisynthetase syndrome and interstitial lung disease (TikTok: @ericadeasza)
- Lindsay Guentzel, living with dermatomyositis and antisynthetase syndrome (Instagram: @lindsayguentzel)
- Holly Jones, living with polymyositis and interstitial lung disease (Instagram: @themyolife)
- Vance Robinson, living with inclusion body myositis (Instagram: @vrobb805)
Past Heroes in the Fight Awardees
- 2025 TMA Patient Ambassador Awardee Tri Bourne, living with dermatomyositis
- 2024 TMA Patient Ambassador Awardee Karen Alexander, living with dermatomyositis
- 2023 TMA Patient Ambassador Awardee Peter Frampton, living with inclusion body myositis
More Patient, Care Partner, and Provider Stories
- Patient stories on TMA’s blog
- Care partner stories on TMA’s blog
- Dr. Merrilee Needham, neurologist
- Dr. Lisa Christopher-Stine, rheumatologist