The Myositis Association is proud of its long and successful history of supporting those who live with these rare diseases, funding innovative research, and increasing myositis awareness and advocacy.

The organization was first created by Betty Curry in March, 1993, as the Inclusion Body Myositis Association (IBMA), a nonprofit corporation. Sixteen founding members, whose names were provided by the National Organization of Rare Disorders (NORD), stepped forward to provide the impetus for this new organization.

Extensive outreach through the medical community and later through the internet touched off enormous growth. As of January 1, 2003, the name changed to The Myositis Association (TMA) to include the growing membership on every continent. The list of 16 patients has since grown to more than 25,000.

Since then, scientists, practicing physicians, and other medical professionals have supported the organization through the Medical Advisory Board (MAB). This group provides scientific support for the information TMA provides through our website, programming, conferences, and our many patient resources. The MAB also guides TMA’s Research Grants Programs, which was begun in 2002 and has funded nearly $8 million in myositis research.

TMA’s first patient conference, a signature event held annually, was first hosted in 1995 with panels of medical experts, peer support sessions, support group training, opportunities to meet other patients and their families, and much more.

These are some of TMA’s historical milestones.

2025

2024

  • TMA hosted the third annual Heroes in the Fight awards ceremony in conjunction with the International Annual Patient Conference. Recognition included supermodel and DM patient Karen Alexander with TMA’s Patient Ambassador Award, Dr. Thomas Lloyd with TMA’s Heroes in Science Award, and Karolinska University Hospital Myositis Clinic with TMA’s Heroes in Healthcare Award. New this year was the Marianne Moyer Myositis Leadership Award presented to Donna DeFant from TMA’s SW Florida KIT Support Group.
  • TMA awarded $125,000 in research funding.
  • TMA announced the Meredith C. Thomas Memorial Research Fellowship Award, dedicated to providing resarch funding for early career scientists who focus on antisynthetase syndrome and interstitial lung disease.
  • TMA partnered with Myositis Support and Understanding to host an Externally Led Patient Focused Drug Development meeting with the FDA to bring awareness to the needs of these who live with dermatomyositis.
  • TMA participated in the 5th Global Conference on Myositis (GCOM) held in Pittsburgh, PA. TMA organized and led a group of representatives from 12 international patient advocacy organizations (PAO) to bring the patient’s voice into the scientific presentations. PAO members also met for presentations and discussion relevant to these organizations. Under TMA leadership, this PAO group continued meeting and sharing as an ongoing coalition.

2023

  • TMA celebrated its 30th anniversary with a year-long celebration.
  • TMA along with other PAOs recognized World Myositis Day on September 21 with myositis awareness events.
  • TMA hosted the second annual Heroes in the Fight awards ceremony in conjunction with the International Annual Patient Conference. The gala event recognized Grammy award winning guitarist and IBM patient Peter Frampton with TMA’s Patient Ambassador Award, Dr. Rohit Aggarwal with TMA’s Heroes in Science Award, and the University of California at Irvine ALS and Neuromuscular Center with TMA’s Heroes in Healthcare Award. Special recognition was bestowed on Octapharma for facilitating the first FDA approved treatment for myositis (Octagam 10% for DM).
  • TMA awarded $300,000 in research funding, incuding one pilot project grant and one fellowship grant.

2022

  • TMA hosted the first Heroes in the Fight awards ceremony, recognizing Bitsy Anderson with TMA’s Patient Hero Award, Dr. Fred Miller with TMA’s Scientific Hero Award, and Johns Hopkins Myositis Center with TMA’s Heroes in Healthcare Award.
  • TMA awarded $300,000 in research funding, incuding one pilot project grant and one fellowship grant.
  • TMA participated in the 4th Global Conference on Myositis (GCOM) in Prague, Czech Republic. 

2021

  • TMA published the ‘Pantone Project” to support quicker diagnoses and treatment of dermatomyositis in people of color.
  • TMA launches a global collaborative of myositis-focused patient advocacy organizations promoting international partnership and collaborative work.
  • TMA hosted its second Virtual International Annual Patient Conference.
  • TMA awarded $300,000 in research funding, incuding one pilot project grant and one fellowship grant.

2020

  • TMA hosted its first Annual Virtual Summit during May, Myositis Awareness Month.
  • TMA hosted its first Virtual International Annual Patient Conference due to COVID-19.
  • TMA awarded $300,000 in research funding, incuding one grant to support a clinical trial and one fellowship grant.

2019

  • TMA awarded $350,000 in research funds for three pilot projects.
  • TMA’s nomination for the Global Genes Rare Champion of Hope Award was granted to the Myositis Assessment and Clinical Studies Group (IMACS).
  • TMA adds affinity groups to its growing collection of support opportunities for those who live with myositis.
  • TMA participated in the Global Conference on Myositis (GCOM) 2019 in Berlin, Germany.

2018

  • TMA celebrated its 25th Anniversary with a year-long recognition of this significant milestone, which included three member-funded campaigns in its honor.
  • TMA hosted a 25th Anniversary Gala at the Muhammed Ali Center in Louisville, KY in conjunction with the Annual Patient Conference.
  • In honor of its 25th anniversary, TMA recognized three myositis researchers for their significant contributions to increasing the understanding of myositis diseases and treatments.  Kanneboyina Nagaraju, PhD, DVM received an award for 5 years of Outstanding Service; Lisa Rider, MD received an award for 15 years of Outstanding Service; and Ingrid Lundberg, MD, PhD received an award for 25 years of Outstanding Service.
  • TMA expanded its Medical Advisory Board to 23 members, adding diversity to the MAB with three new members: a pulmonologist and a physical medicine and rehabilitation specialist from Johns Hopkins Myositis Center and an occupational therapy specialist from Karolinska University in Sweden.
  • TMA funded two new pilot projects and one new fellowship grant for a total of $220,000 in research funding.
  • TMA Executive Director Bob Goldberg, retired after leading the organization for more than 16 years.

2017

  • TMA funded four new research projects, totaling $350,000.
  • TMA expanded its Medical Advisory Board to 22 members, adding four new members: neurologists from UC, Irvine, UCLA, and Germany, and a rheumatologist from the National Institutes of Health.
  • Thirty-nine medical schools participated in TMA’s Visiting Professors Program to educate medical school students about myositis diseases.
  • TMA helped sponsor the Global Conference on Myositis (GCOM), bringing together more than 300 myositis experts from 22 countries around the world in Potomac, Maryland. TMA hosted presentations for myositis patients during the conference.
  • TMA hosted regional mini-conferences in south Florida and southern California.

2016

  • TMA funded three new research projects, totaling $292,000.
  • Thirty-five medical schools participated in TMA’s Visiting Professors Program to educate medical school students about myositis.
  • TMA’s Annual Patient Conference in New Orleans brought together more than 440 patients, care partners, and other attendees.

2015

  • TMA funds seven research projects, totaling $747,000.
  • TMA adds Myositis Awareness Month (May) to increase opportunities for raising awareness of the disease.
  • TMA receives bequests totaling $375,000.
  • TMA adds five new members to its Medical Advisory Board, none of whom have ever served on the MAB previously.
  • TMA partners with the San Francisco Giants baseball team for a myositis awareness and fundraising event at AT&T Park.

2014

  • TMA initiated a Visiting Professors Program to educate medical students about myositis, and 33 medical schools sign up to participate.
  • TMA created and published the first-ever Physician’s Guide to Myositis.
  • TMA produced its first-ever advocacy newsletter, The Advocate.
  • TMA funded two new research projects for $100,000 each.
  • TMA received bequests totaling $875,000.

2013

  • TMA’s Annual Patient Conference is the largest ever with 450 attendees.
  • TMA funded three new research projects totaling over $200,000.
  • With support from TMA, the first-ever gene therapy clinical trial for inclusion-body myositis began recruiting participants.
  • TMA’s Annual Myositis Symposium for myositis researchers has the largest attendance yet.
  • TMA celebrates its 20th Anniversary and a related fundraising campaign raises more than $100,000.

2012

  • TMA’s Myositis Medical Symposium for physicians was held in conjunction with the Annual Patient Conference to facilitate collaboration between specialties.
  • TMA initiated a scholarship program allowing 29 TMA members with limited means to attend the Annual Patient Conference.

2011

  • TMA was awarded $1 million from the US Department of Defense to study potential environmental triggers for myositis among military personnel and the public.
  • More than 1,800 surveys were received from myositis patients for inclusion in MYOVISION, a patient registry project between TMA and NIEHS.
  • TMA eliminated membership dues to enable all myositis patients to receive information and member benefits regardless of their financial situation.
  • TMA added five new members to its Board of Directors and five new members to its Medical Advisory Board.

2010

  • TMA began assembling a comprehensive registry of myositis patients to study causes of the myositis and aid researchers in developing better treatment and finding a cure.
  • TMA awarded $100,000 in research grants to fund a myositis fellow at Washington University and a researcher at UCLA.
  • TMA added four new members to its Board of Directors and two new members to its Medical Advisory Board.

2009

  • TMA received $1 million from Congress to explore the relationship between the environment and myositis.
  • TMA awarded $200,000 to fund gene therapy research related to myositis.

2008

  • TMA published Myositis 101, a patient’s guide to myositis.
  • TMA was awarded $167,000 from the US Congress for the creation of a myositis patient registry.
  • TMA added seven new members to the Board of Directors and six new members to the Medical Advisory Board.
  • TMA awarded two fellowship grants of $100,000 each.

2007

  • The US Congress granted TMA an appropriation of $170,000 to fund a myositis patient registry to better track myositis patients and treatments.
  • Good Morning America, New York Times, Discovery Health Channel and Comcast Cable’s Healthline provided coverage of myositis.
  • TMA awarded $640,000 in research grants and fellowships.

2006

  • The US House of Representatives passed a resolution designating September 21 as National Myositis Awareness Day.
  • TMA published Myositis and You, a comprehensive 466-page book addressing the entire spectrum of issues and challenges related to juvenile forms of myositis.
  • TMA awarded $625,000 in grants and fellowships.

2005

  • TMA sponsored the first-ever International IBM Symposium for researchers.
  • TMA held the first face-to-face meeting of the Medical Advisory Board in Washington, DC.
  • TMA awarded $200,000 in grants and fellowships.

2004

  • TMA sponsored the first national conference devoted to juvenile myositis in Washington, DC.
  • More than 300 members attended TMA’s Annual Conference in Las Vegas.
  • TMA awarded more than $375,000 to an international group of researchers.

2003

  • TMA celebrated 10 years of service to the myositis community.
  • TMA published special comprehensive issues of The Outlook magazine covering products for myositis patients, treatment options, and developments.
  • TMA offices moved from Harrisonburg, VA, to Washington DC.
  • TMA membership grew to 2,334, the highest in its history and double the 1999 enrollment. This included 2,230 medical professional members, also an all-time high.
  • TMA awarded $330,000 in research funding for four projects.

2002

  • The organization changed its name from the Myositis Association of America (MAA) to The Myositis Association (TMA).
  • TMA awarded its first research grants to scientists from around the world, with nearly $1 million in grants approved.

2001

  • Janice Goodell organized the first Myositis Awareness Day on September 21 in Massachusetts.
  • MAA’s Annual Patient Conference was held in San Diego, becoming first to be held outside Washington DC area.
  • MAA receives $1.6 million bequest for IBM research from a Canadian MAA member.

2000

  • MAA developed its first strategic plan, expanding its mission to include advocacy and research.
  • MAA joins other autoimmune groups in support of Children’s Health Act of 2000, which calls for NIH to increase research into all rare childhood diseases.

1999

  • MAA’s Spread the Word campaign was initiated to increase recognition of myositis in health care and patient communities.

1998

  • MAA’s JM Messenger was published as a separate newsletter to serve juvenile population.
  • MAA became a member of the Autoimmune Coalition and attended the Coalition’s first meeting at NIH.
  • Nancy Armentrout replaced Betty Curry as CEO.

1997

  • MAA developed its own web site, reaching more patients and health professionals.
  • MAA’s Annual Patient Conference included activities for juvenile myositis (JM) parents, families, and patients.

1996

  • IBMA merged with the National Myositis Association (NMA), expanding to include all forms of inflammatory myopathies, and changed its name to the Myositis Association of America (MAA).
  • Physician advisors from NMA joined MAA’s Medical Advisory Board.

1995

  • IBMA held its first medical symposium in Herndon, VA.
  • IBMA held its first member conference following the symposium, with more than 100 members attending.
  • IBMA launched an internet web page on a neurologist’s site and grew by more than 100 percent.

1994

  • IBMA hired its first part-time staff.
  • IBMA’s first local representative was recruited.
  • IBMA staff and volunteers attended the American Academy of Neurology meeting, adding 95 physicians to their mailing list.
  • IBMA’s Board of Directors had its first face-to-face meeting.

1993

  • Harrisonburg entrepreneur and IBM patient Betty Curry organized the Inclusion Body Myositis Association (IBMA).
  • The National Organization for Rare Disorders (NORD) shared 16 patient names for IBMA’s first mailing list.
  • An early IBMA member donated $500 for filing fees to enable the organization to incorporate as a 501C3 nonprofit.
  • IBMA’s The OutLook, a quarterly newsletter, was published.