Changing the landscape of antisynthetase syndrome and ILD forever

March 27, 2025March 25, 2025 Category: Research Breakthroughs

By Iazsmin Bauer Ventura, MD

On November 1, 2024, Dr. Ventura offered the following words at The First Annual Meredith C. Thomas Trivia Fundraiser, a benefit for TMA’s Meredith C. Thomas Memorial Fellowship fund. This research fellowship is currently recruiting a physician scientist to study antisynthetase syndrome and myositis interstitial lung disease.

I am a rheumatologist, a myositis and interstitial lung disease (ILD) expert at the University of Chicago. I am honored to be at this beautiful event and humbled to be speaking to you this evening.

This past week, I met three new patients who came to see me in my myositis/ILD clinic. One has been getting progressively more ill since 2017, was mistakenly diagnosed with another type of autoimmune disease, and has never been treated. The second patient was an elderly black man who has had ILD for more than 20 years and has been on prednisone—a dangerous drug to be taking for long periods of time—and nothing else the entire time. He came to see me in a wheelchair, connected to 7 liters of supplemental oxygen, a very high dose of oxygen. The third patient was a young woman who came to see me for a third opinion after what has been a stressful year dealing with a new disease without confident answers.

All three have antisynthetase syndrome, a rare type of autoimmune disease, which is usually classified under the big umbrella of inflammatory myopathies. Antisynthetase syndrome is very commonly associated with interstitial lung disease (ILD), a chronic, usually progressive inflammatory and scarring disease that affects the lung tissue.

Beyond their diagnosis of antisynthetase syndrome and ILD, these three individuals had another thing in common: the difficulty of getting to the right diagnosis and proper treatment.

This is one of two reasons we are here today: we want to help people to be diagnosed properly and in a timely manner, and we want them to receive the treatment and support they need as soon as possible.

Through the Meredith Thomas Legacy Fundraising event, the Thomas family aims to support a fellowship in antisynthetase syndrome and ILD. A fellowship is a special training opportunity in which clinicians and researchers can dedicate a period of their careers to specializing in a single topic, in this case antisynthetase syndrome and ILD. After this intensive training, these physician scientists can develop their clinical and research careers elsewhere, while continuing to enhance our knowledge about this disease, treating patients, communicating, and training upcoming generations about antisynthetase syndrome and ILD.

You see, a fellowship is a seed, from which big trees can grow. These trees provide coverage, protection to the ecosystems around them. And, through their seeds, their legacy travels far, sometimes very far, supporting distant ecosystems, becoming forests, and changing the landscape forever.

This legacy is the second, but not least important, big reason we are here today. It is the legacy of Meredith Claire Thomas. May her joyful and contagious spirit fuel the careers of talented, young physicians and researchers who can touch the hearts—and the lungs—of countless patients everywhere. May these seeds, these specialized physicians, through the Meredith Thomas legacy fellowship, help transform the grieving hearts of Meredith’s loved ones into dense forests of care, love, and knowledge.

Meredith Thomas was diagnosed with antisynthetase syndrome and interstitial lung disease and passed away at age 33 in November 2023. In her honor, her family created the fundraiser Meredith’s Legacy to support a TMA Myositis Research Fellowship aimed at funding grants for early-career researchers and clinicians focused on learning more about how best to treat antisynthetase syndrome and interstitial lung disease.