This year’s fellowship, totaling $107,500, has been awarded to Dr. Angeles Galindo Feria, a rheumatology specialist and postdoctoral researcher at Karolinska Institutet in Sweden. Dr. Galindo Feria’s research project, titled “Clinical and Immunological Determinants of Interstitial Lung Disease in Antisynthetase Syndrome,” aims to revolutionize how clinicians understand and manage lung complications in ASyS by integrating immune profiling with prognostic markers.

Under the mentorship of Dr. Ingrid Lundberg, a globally recognized expert in idiopathic inflammatory myopathies, Dr. Galindo Feria will explore how overactive B and T cells contribute to lung damage in ASyS. Her goal is to develop non-invasive diagnostic tools—including saliva and sputum-based tests—that can predict which patients are at risk of severe, irreversible lung scarring. This approach could pave the way for precision medicine in ASyS, allowing for earlier and more targeted interventions.

This fellowship is a transformative opportunity to change how we understand and manage lung complications in antisynthetase syndrome. Our goal is to move beyond the current one-size-fits-all approach toward true precision medicine.

— Angeles Galindo Feria, MD, PhD

The fellowship was made possible through the Meredith’s Legacy fundraiser, launched by Meredith’s family to support early-career researchers dedicated to improving outcomes for patients with ASyS and ILD. Meredith’s story continues to inspire a new generation of scientists committed to tackling the challenges of rare autoimmune diseases.

ASyS is a complex condition that affects both muscles and lungs, with ILD being one of its most serious and life-threatening complications. Current treatments are often inadequate, and clinicians lack reliable tools to predict disease progression. TMA’s investment in research like Dr. Galindo Feria’s reflects its ongoing commitment to advancing scientific understanding and improving patient care.

Since 2002, TMA has awarded nearly $8.5 million in research grants to support studies across the spectrum of myositis diseases. The Meredith C. Thomas Memorial Fellowship marks a significant milestone in this journey—one that blends scientific innovation with heartfelt remembrance.

Read the press release

The post TMA Awards First Meredith C. Thomas Memorial Fellowship appeared first on The Myositis Association.

Their findings, published in the journal Sleep Epidemiology, suggested that poor sleep predicted a decline in mobility after a chronic health diagnosis, especially in those with signs of sleep apnea.

“Poor sleep is often overlooked or assumed to be a consequence of aging, functional decline, or disability in those with chronic health conditions,” said the study’s senior author Tiffany J. Braley, MD, MS, associate professor of neurology. “However, sleep disturbances and disorders may also be an upstream contributor to these issues.” Braley directs the multiple sclerosis and neuroimmunology division at the University of Michigan Health.

The study’s first author, Daniel Whibley, PhD, added that sleep has a direct impact in how patients accomplish activities that may be part of their treatment. Whibley is an assistant professor of physical medicine and rehabilitation at University of Michigan Health.

Chronic disease coupled with inadequate sleep was also associated with an increased use of assistive devices such as a cane or wheelchair. Braley said she encourages providers to screen patients with chronic conditions for sleep disturbances, and refer them to sleep specialists, because the vast majority of sleep disorders are highly treatable.

Read the study.

See a recording of a TMA Empowerment Clinic “Getting a Good Night’s Sleep with Myositis.”

The post Poor sleep may make mobility worse appeared first on The Myositis Association.

Tri will be honored with TMA’s Heroes in the Fight Patient Ambassador Award on September 20, 2025, in Dallas, TX. The gala is the centerpiece of MyoCon: TMA’s Global Myositis Patient Conference, recognizing outstanding leadership and excellence in the myositis community.

The Myositis Heroes in the Fight Patient Ambassador Award is annually presented to an individual that has demonstrated sustained effort and extraordinary success in raising awareness of myositis diseases among the public.

From the sands of the Olympic Games to the stage of advocacy, Tri Bourne exemplifies perseverance. As a professional athlete, Olympian, and broadcaster, he didn’t let a diagnosis of dermatomyositis in 2016 define his journey. Instead, he turned challenge into fuel. Tri returned to competition in August 2018, and won the first post-diagnosis international tournament he entered on October 4, 2018 at an FIVB qualifier in Qinzhou, China. Tri has been rising, competing, and inspiring countless others facing myositis since then.

“I’m only going to be a man of my values.”

Tri Bourne

Tri Bourne has been featured in AwareNow as the Official Ambassador for Invisible Disabilities Awareness and has had the honor of wearing a Team USA Jersey for 10 years! He claimed 12 Association of Volleyball Professionals titles, including two Manhattan Beach Opens, before retiring this fall from professional beach volleyball.

Sandcast Podcast

Tri Bourne hosts the popular SANDCAST podcast, the first and leading beach volleyball podcast in the world, with cohost Travis Mewhirter. You can catch the latest in beach news and episodes here.

A Family Affair

Tri will be accompanied in Dallas by his wife Gabrielle and their two children. Gabrielle is a luminary in her own right—as an actress, producer, and builder in addition to being a myositis care partner.

Tri has been an incredibly impressive athlete during his 14 years as a professional beach volleyball player. He was the AVP Rookie & Most Improved Player in 2013, and then—a decade later—his 2022 season featured three AVP wins.

“There are a lot of stats, but what really impresses us at TMA is the 698 days between matches that Tri spent sidelined over the 2017-18 seasons. He was battling back from dermatomyositis each and every one of those days, demonstrating the resilience of our myositis community. Tri and Gabby Bourne are truly heroes in the fight against myositis,” says Paula Eichenbrenner, TMA Executive Director.

TMA is so excited to welcome the “Bourne on the Beach” family to MyoCon 2025!!!!

Thanks to argenx, the lead sponsor for TMA’s Patient Ambassador Award.

The post Tri Bourne: TMA’s 2025 Patient Ambassador Awardee appeared first on The Myositis Association.

Their findings, published in the journal Sleep Epidemiology, suggested that poor sleep predicted a decline in mobility after a chronic health diagnosis, especially in those with signs of sleep apnea.

“Poor sleep is often overlooked or assumed to be a consequence of aging, functional decline, or disability in those with chronic health conditions,” said the study’s senior author Tiffany J. Braley, MD, MS, associate professor of neurology. “However, sleep disturbances and disorders may also be an upstream contributor to these issues.” Braley directs the multiple sclerosis and neuroimmunology division at the University of Michigan Health.

The study’s first author, Daniel Whibley, PhD, added that sleep has a direct impact in how patients accomplish activities that may be part of their treatment. Whibley is an assistant professor of physical medicine and rehabilitation at University of Michigan Health.

Chronic disease coupled with inadequate sleep was also associated with an increased use of assistive devices such as a cane or wheelchair. Braley said she encourages providers to screen patients with chronic conditions for sleep disturbances, and refer them to sleep specialists, because the vast majority of sleep disorders are highly treatable.

Read the study.

The post Poor sleep may make mobility worse appeared first on The Myositis Association.

TMA is proud to announce a significant milestone in this ongoing effort to raise awareness. Representative Rich McCormick, who serves Georgia’s 7th Congressional District, has introduced a resolution in the US House of Representatives supporting the designation of May as National Myositis Awareness Month. This resolution, H.Res. 277, underscores the importance of public awareness and education campaigns for those who live with rare diseases like myositis.

The post Press release: MAM Resolution in US House of Representatives appeared first on The Myositis Association.

This study was an important step in the development of the DM-DSQ as a tool in clinical trials and other research to evaluate DM symptoms from the patient’s perspective. It involved qualitative interviews with 30 individuals with DM, aiming to validate the DM-DSQ and ensure it accurately captures the experience of those who live with DM.

Importantly, Kaniah Gunter, a dedicated TMA member, advocate, and leader, was also part of the research team that conducted the study. As a co-leader of TMA’s Women of Color Affinity Group, Kaniah has been instrumental in raising awareness about myositis among communities of color, a group that is disproportionately affected by myositis. Diagnosed with dermatomyositis herself, Kaniah’s insights and experiences have enriched the study, ensuring the DM-DSQ reflects the diverse experiences of all patients.

The DM-DSQ is currently being used in a Phase 2 clinical trial and shows promising preliminary results. It has the potential to become a valuable tool for evaluating patient-reported outcomes in DM, paving the way for improved treatment strategies and better quality of life for those affected by this debilitating disease.

This collaborative effort underscores the importance of patient-centered research and the dedication of TMA’s medical advisors and members to advancing the understanding and treatment of myositis. The Myositis Association continues to support and advocate for innovative research that brings hope and improved care to the myositis community.

Read the report of this study.

See a video interview with Dr. Christopher-Stine.

The post TMA member and medical advisors pivotal in patient reported outcomes research appeared first on The Myositis Association.

COLUMBIA, MD, UNITED STATES, February 27, 2025 /EINPresswire.com/ — The Myositis Association (TMA), in collaboration with the Myositis International Health and Research Collaborative Alliance (MIHRA) and Nori’s Fight, will host, We Care for Rare Summit: Celebrating Myositis Science and Rare Patient Stories, on Friday, February 28, 2025, from 1:00–3:00 PM ET, followed by a virtual happy hour from 3:00–4:00 PM ET.

This interactive virtual event will bring together medical experts, researchers, advocates, and patients to highlight groundbreaking research, share personal experiences, and discuss the impact of rare diseases on healthcare. Discussions will focus on rare diseases collectively and their impact on research and broader healthcare advancements.

My journey with rare disease has taught me that the challenges we face don’t just affect our health—they impact every aspect of our lives.”

— Lindsay Guentzel, keynote speaker

Event Highlights:

• Welcome & Group Photo – Laurie Boyer, TMA Board Chair
• Pride in Rare Disease & Science – Insights from top myositis researchers
• Flash Talks: Rapid presentations on new therapies, clinical trials, and patient-driven research
• Flash Talks: Myositis Science and Myositis ILD Patient Story
• Keynote: Lindsay Guentzel – The Full-Time Job of Living Rare

“My journey with rare disease has taught me that the challenges we face don’t just affect our health—they impact every aspect of our lives,” said Lindsay Guentzel, keynote speaker. “I’m honored to share my story and to amplify the voices of others in our community who are redefining what it means to live with a rare disease.”

• Virtual Happy Hour – A celebration of the rare disease community

“Especially on Rare Disease Day, TMA celebrates the resilience of the myositis community and proudly supports the clinicians, scientists, and research teams who are bringing us closer to more and better treatments in myositis,” says TMA Executive Director Paula Eichenbrenner. “Ongoing innovation is desperately needed, with approximately 95% of the 7,000 known rare diseases having no treatment.”

How to Attend: RSVP here

About The Myositis Association (TMA)
Myositis is a group of rare autoimmune diseases that cause muscle weakness, severe pain, and life-threatening complications. The Myositis Association is a global nonprofit dedicated to patient support, awareness, and funding research to advance treatment and find a cure.

Read the press release

The post TMA Hosts Patient Stories on Rare Disease Day appeared first on The Myositis Association.

This legislation is notable in that it goes beyond “right to try” laws, which already exist in Georgia and other states. “Right to try” applies to treatments that have gone through part of the FDA clinical trials process to see if they are safe but have not received FDA approval.

This bill expands that access to treatments that have not gone through the approval process at all. Many of these treatments are for rare conditions, and the clinical trials process is too costly and time consuming to make it worthwhile for a drug company to pursue. Rather than allowing these therapies to sit on the shelf going unused, this bill will allow them to be used to treat appropriate patients, even though they are not FDA approved.

Patients who seek these treatments are typically those who have tried all other approved therapies without success. Safeguards are in place to protect patients and ensure ethical and medically appropriate procedures are followed.

“I was honored to testify in support of the ‘Hope for Georgia Patients’ bill in the Georgia legislature, which if it becomes law will give patients with rare diseases in Georgia access to more life-saving treatment options,” Rich says. “I strongly support this bill in Georgia and hope to see other states pursue similar legislation in the future.”

During his testimony, Rich told lawmakers his father’s story of living with inclusion body myositis. Augie DeAugustinis, who also served on TMA’s Board of Directors, was diagnosed with IBM 17 years ago.

In 2014, Augie participated in a phase 1 clinical trial of a gene therapy, a study that was supported by TMA Research Grant funding. That treatment was successful for Augie, rebuilding muscle tissue in his legs and allowing him to walk for several more years. Unfortunately, researchers were unable to attract enough funding to complete the larger clinical trials necessary to gain FDA approval.  Without the treatment, Augie’s condition has deteriorated to the point where he now manages life in a wheelchair full time and relies on others to help him with daily living activities.

“Had this legislation been law at that time, it would have cleared a path for my dad to continue utilizing this effective treatment,” Rich says. “It likely would have delayed the further breakdown of his muscles, and extended quality of life for him.”

When this important bill becomes law, it will create greater access to life-saving and impactful therapies for Georgia citizens fighting rare diseases. TMA is excited to share that the bill advanced out of committee to the full Georgia Senate.

Read the legislation.  

The post TMA board vice chair testifies in support of Georgia’s Hope for Patients Act appeared first on The Myositis Association.

At TMA, we believe research is the key to better treatments and a brighter future for those living with myositis.

Our mission includes an important commitment to “fund innovative myositis research.” In fact, TMA has invested nearly $10 million into research grants since 2002 – but one organization alone can’t close evidence gaps. Federal investment in research and strong public/private partnerships are essential to scientific inquiry and innovation.

Significant funding cuts were recently announced by the National Institutes of Health (NIH) in the US, with the intention to cap all indirect costs to 15% of the total awarded grant. These are the unavoidable costs like keeping the lights on, cleaning the labs, covering administrative costs, and so much more. These cuts would have a profound impact on medical research, including critical work being done to study the forms of myositis, along with other autoimmune and neuromuscular diseases.

TMA stands firmly in opposition to these cuts. Reducing research funding slows progress and delays life-changing breakthroughs. We stand with each family affected by myositis in calling for more investment into research – not less.

We stand with the dedicated myositis investigators who selflessly commit their careers, expertise, and compassion to our community. We are so grateful for the leadership of TMA’s Medical Advisors, current and past. Our Medical Advisory Board, comprised of the most distinguished experts and researchers in the field, plays a crucial role in guiding and overseeing the vital research supported by TMA.

Any funding cuts will directly impact the work of these and other myositis investigators across the country, and impact US collaborations with the international myositis research community. The resources needed to conduct clinical trials, basic science, natural history and registry studies, and other essential research activities will be significantly reduced.

In protest of this action by the NIH, TMA was one of 40 patient advocacy organizations who signed on to a letter to Dr. Matthew J. Memoli, Acting Director the NIH, strongly urging him to immediately reverse and retract the “Supplemental Guidance to the 2024 NIH Grants Policy Statement: Indirect Cost Rates.”

TMA promises that we will continue to partner globally with leading researchers, government agencies, and advocacy groups to push for more investment in rare disease research. Please contact us directly with invitations to collaborate on a project, or unite in a coalition (email Paula and email Laurie).

How can you advocate for stronger research funding alongside TMA?

• Join TMA, if you haven’t already! Membership is at no cost and patients, care partners, researchers, and health care providers are all welcome.
  
• Register for our next Myositis Research Insights webinar, Tuesday, March 11, at 4:00 PM ET US. TMA Medical Advisor Dr. Cheilonda Johnson will share insights from her research portfolio, including her recent TMA-funded pilot project.
  
• Get involved with Proclamation 50, our effort to secure proclamations in every state about Myositis Awareness Month. This is important because it gives us grassroots connections to every state legislature in the US.
  
• Follow TMA and our partners on social media. We will share opportunities like this action alert from Muscular Dystrophy Association (MDA). TMA is a proud member of MDA’s Neuromuscular Advocacy Coalition, and we encourage our myositis family to contact their Congresspersons to oppose NIH funding cuts.
  
• Support TMA’s research initiatives. We will happily apply your donation to a specific area of myositis research. Let us know if you’d like to support research into IBM, DM, ASyS, NM, or PM specifically.

On behalf of TMA, we say: Let’s prioritize research, not diminish it. Thank you for standing with us!

We believe in the necessity of research funding and are excited about the potential of research to transform the lives of those affected by myositis.

The post Rare diseases need more research, not less appeared first on The Myositis Association.

TMA funds projects across the spectrum of myositis diseases for researchers around the globe. We are pleased to announce that in 2024 three of these research projects, totaling nearly half a million dollars, were completed.

• A pilot grant of $200,000 to Cheilonda Johnson, MD, MHS, Assistant Professor of Medicine (Pulmonary, Allergy and Critical Care) at the University of Pennsylvania School of Medicine, Philadelphia, PA.Dr. Johnson’s project identified specific genes associated with interstitial lung disease (ILD) that occur in those with myositis and created a database of lung tissue samples from patients with different forms of the disease. This project showed that having myositis genes not only predicts if a person is at risk for developing ILD, but also the type of myositis genes predicts which patients are at higher risk for severe disease.

• A clinical research fellowship grant of $100,000 to Alexander Oldroyd, MD, Academic Clinical Lecturer at the University of Manchester, Manchester, England, UK. Dr. Oldroyd helped to develop a smart phone application to remotely monitor continuous activity levels of patients with myositis with the ability to detect disease symptom-based flares. Not only can this provide a more accurate measure of disease activity, but it can be a more accurate measure of treatment effectiveness that can be valuable for clinical trials.

• A research fellowship grant of $100,000 to Chiseko Ikenaga, MD, PhD, Assistant Professor of Neurology at Kitasato University, Tokyo, Japan. During the fellowship, Dr. Ikenaga worked with neurologist Dr. Thomas Lloyd at the Myositis Center at Johns Hopkins University School of Medicine, Baltimore, MD. Dr. Ikenaga demonstrated that there is a genomic pathway related to stress that may cause critical muscle damage in patients with inclusion body myositis (IBM). This pathway is associated with atrophy of muscle fibers and inflammation and can be a potential target for drug therapy.

“These projects advance our understanding of different forms of myositis, bringing much-needed hope to those of us who live with these rare, debilitating conditions for which there are few, if any, effective treatment options,” says Martha Arnold, former member of TMA’s Board of Directors, who lives with inclusion body myositis.

TMA’s Research Grants Program is funded entirely by individuals who live with or love someone with myositis. If you’d like to be part of the search for understanding, effective treatments, and a cure for myositis diseases, please consider making a donation.

See the press release.

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