Rare Diseases Need More Research, Not Less

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.

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.

By Paula Eichenbrenner, MBA, CAE , TMA Executive Director and Laurie Boyer , TMA Board of Directors Chair.