1993

  • Harrisonburg entrepreneur and IBM patient Betty Curry organizes the Inclusion Body Myositis Association (IBMA).
  • The National Organization for Rare Disorders (NORD) shares 16 patient names for first mailing list.
  • Early IBMA member donates $500 for filing fees to get IBMA off the ground.
  • First IBMA OutLook – the quarterly newsletter – published.

1994

  • IBMA hires first part-time staff.
  • First local representative recruited.
  • IBMA staff and volunteers attend the American Academy of Neurology meeting, adding 95 physicians to IBMA mailing list.
  • IBMA Board has its first face-to-face meeting.

1995

  • IBMA holds first medical symposium in Herndon, VA.
  • First member conference follows symposium, with more than 100 members attending.
  • IBMA launches internet web page on neurologist’s site and grows by more than 100 percent.

1996

  • IBMA merges with the National Myositis Association (NMA), expands to include all forms of myopathies and changes its name to the Myositis Association of America (MAA).
  • Physician advisors from NMA join MAA’s Medical Advisory Board.

1997

  • MAA develops its own web site and reaches more patients and health professionals.
  • Conference offers activities for juvenile myositis (JM) parents, families, and patients.

1998

  • First JM Messenger published as a separate newsletter to serve juvenile population.
  • MAA selects first JM field representative.
  • MAA becomes a member of the Autoimmune Coalition and attends the Coalition’s first meeting at NIH.
  • Nancy Armentrout replaces Betty Curry as CEO.

1999

  • “Spread the Word” campaign begins to increase recognition of myositis in health care and patient communities.

2000

  • Organization develops first strategic plan, expanding 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.

2001

  • Janice Goodell organizes first Myositis Awareness Day on September 21 in Massachusetts.
  • Annual Conference 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.

2002

  • Bob Goldberg hired as Executive Director.
  • Board changes name from MAA to The Myositis Association (TMA).
  • TMA opens office in Washington DC to increase exposure, advocacy efforts.
  • First round of research grants awarded to scientists around the world, with close to $1 million in grants approved.

2003

  • TMA celebrates 10 years of service.
  • TMA begins work on publishing a book on juvenile forms of myositis with the help of medical experts and families of those with JM.
  • TMA publishes special comprehensive issues of The OutLook that cover products for myositis patients and treatment options and developments.
  • Offices officially move from Harrisonburg, VA, to Washington DC.
  • TMA has grown to 2334 members, the highest in its history and double the 1999 enrollment; with 2230 medical professional members, also an all-time high.

2004

  • TMA sponsors first national conference solely for juvenile myositis in Washington, D.C.
  • More than 300 members register for TMA Annual Conference in Las Vegas.
  • TMA awards more than $375,000 to international group of researchers.

2005

  • TMA sponsors first-ever International IBM Symposium for researchers.
  • TMA holds first face-to-face meeting of the Medical Advisory Board in Washington, D.C.
  • TMA awards $200,000 in grants and fellowships.

2006

  • U.S. House of Representatives passes resolution designating September 21 as National Myositis Awareness Day.
  • TMA publishes “Myositis and You”, comprehensive 466-page text addressing the entire spectrum of issues and challenges related to juvenile forms of myositis.
  • TMA awards $625,000 in grants and fellowships.

2007

  • Anonymous donor offers to match research donations to TMA up to $500,000 resulting in over $400,000 in additional funds for myositis research in 2007.
  • United States Congress grants 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 provide coverage of myositis.

2008

  • TMA publishes Myositis 101, a guide for those recently diagnosed with myositis.
  • Matching Research Challenge is renewed to match research donations up to $300,000 in 2008.
  • U.S. Congress awards TMA $167,000 for the creation of a myositis patient registry.
  • TMA’s Dues Devoted to Discovery initiative renewed to devote $15 of each $35 membership to research.
  • Online Expert Discussion instituted that proves very popular and instructive.
  • Seven new directors added to Board of Directors and six new Medical Advisory Board members.
  • Several new trials exploring new treatments for myositis are initiated.

2009

  • TMA receives from Congress $1 million earmark to explore the relationship between the environment and myositis.
  • Matching Research Challenge results in $400,000 additional research funds.
  • Two thoroughbred racehorses named with the word “myositis” included in their names to draw attention to the disease.
  • TMA awards an additional grant of $200,000 to fund gene therapy research related to myositis.
  • Decision made to include Medical Advisory Board at TMA Annual Patient Conference.
  • Frequency of online discussions with myositis experts expanded to every other month.
  • News and Announcements Forum added to online Community Forum.
  • Two members added to TMA Medical Advisory Board.

2010

  • TMA begins 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 awards an additional $100,000 in research grants to fund a myositis fellow at Washington University and a researcher at UCLA.
  • TMA made available podcasts with myositis experts through its website for the first time.
  • TMA adds four new members to its Board of Directors and two new members to its Medical Advisory Board.
  • Medical Advisory Board recommends two grant applications for funding related to environmental factors and myositis.
  • TMA receives its largest single unrestricted donation of $100,000 from a living donor.

2011

  • TMA is awarded $1 million from Department of Defense to study potential environmental triggers among military personnel and the public.
  • Over 1800 surveys are received from myositis patients for inclusion in MYOVISION, a patient registry project between TMA and NIH.
  • TMA eliminates membership dues to enable all myositis patients to receive information and member benefits regardless of their financial situation.
  • TMA adds 5 new members to its Board of Directors and 5 new members to its Medical Advisory Board.

2012

  • Myositis Symposium for physicians is added to Annual Patient Conference to facilitate collaboration between specialties.
  • MYOVISION patient registry is closed and cleansing of data and analysis begins.
  • Financial scholarships are provided to 29 people to attend the 2012 Annual Patient Conference.
  • Mission of TMA is updated to emphasize more interaction between physician and patient communities.
  • TMA Net Assets increase nearly 30%.

2013

  • TMA’s Annual Patient Conference is the largest ever with 450 attendees.
  • Three new research projects are funded, totaling over $200,000.
  • First-ever gene therapy clinical trial for inclusion-body myositis gets underway.
  • A new clinical trial sponsored by Novartis is announced for inclusion-body myositis.
  • For the second consecutive year, TMA offers scholarships to its Annual Patient Conference.
  • 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.

2014

  • TMA initiates a Visiting Professors Program to educate medical students about myositis and 33 medical schools sign up to participate.
  • TMA promotes physician education and patient outreach by mailing to 1800 physician offices myositis brochures, publications and an office poster for patient referrals.
  • TMA writes and publishes the first-ever Physician’s Guide to Myositis.
  • TMA produces its first-ever advocacy newsletter, The Advocate.
  • TMA funds two new research projects for $100,000 each.
  • TMA receives bequests totaling $875,000.

2015

  • TMA funds 7 research projects, totaling $747,000.
  • TMA switches Myositis Awareness Day (September 21) to Myositis Awareness Month (May) to increase opportunities for raising awareness of the disease.
  • TMA receives bequests totaling $375,000.
  • TMA adds 5 new members to its Medical Advisory Board, none of whom 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.

2016

  • TMA funds 3 new research projects, totaling $292,000.
  • TMA adds 2 new members to its Medical Advisory Board, an immunologist from France and a rheumatologist from Mayo Clinic – Rochester.
  • TMA Visiting Professors Program to educate medical school students has had 35 medical schools participate.
  • New TMA staff position added — Research & Communications Director.
  • TMA organizes patient focus groups for multiple clinical trials to ensure patient input into trial design.
  • TMA’s Annual Patient Conference in New Orleans has 440 patients and caregivers attending.
  • More than 30 videos from the 2016 Annual Patient Conference made available through TMA’s website.

2017

  • TMA funds 4 new research projects, totaling $350,000.
  • TMA expands its Medical Advisory Board to 22 members total and adds four new members – neurologists from UC, Irvine, UCLA, and Germany, and a rheumatologist from the National Institutes of Health.
  • TMA Visiting Professors Program to educate medical school students has had 39 medical schools participate.
  • TMA helps sponsor the Global Conference on Myositis, bringing together 300 myositis experts from around the world.
  • TMA updates A Physician’s Guide to Myositis and distributes to 8,000 TMA members to provide to their treating physician(s).
  • TMA offers regional mini-conferences in south Florida and southern California.
  • TMA conducts focus groups for 2 clinical trials to ensure patient input into trial design.
  • TMA’s Annual Patient Conference in San Diego has 520 patients and care partners attending.
  • More than 40 videos from the 2017 Annual Patient Conference made available through TMA’s website.

2018

  • TMA unveils its new website.
  • TMA celebrates its 25th Anniversary with a year-long recognition of this significant milestone, which included three member-funded campaigns in its honor.
  • TMA hosts a 25th Anniversary Gala at the Muhammed Ali Center in Louisville, KY.
  • In honor of its 25th anniversary, TMA recognized 3 myositis researchers for their significant contributions to increasing the understanding of myositis diseases and treatments.  Kanneboyina Nagaraju, PhD, DVM received the 5 years of Outstanding Service; Lisa Rider, MD received the 15 years of Outstanding Service; and Ingrid Lundberg, MD, PhD received the 25 years of Outstanding Service award.
  • TMA’s Annual Patient Conference in Louisville, KY attracts over 450 individuals with myositis, care partners, and family members.
  • TMA expands its Medical Advisory Board of 23 members, adding diversity to the MAB with 3 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 funds 2 new pilot projects and 1 new fellowship grant for a total of $220,000 in research funding.
  • TMA introduces a new support service for care partners called Talking Circles.
  • TMA revises Myositis 101, a lay person’s guide to myositis.
  • TMA Executive Director Bob Goldberg, retires after leading the association for 16 years.
  • The Bob Goldberg Annual Conference Scholarship Fund is started to provide support for the Annual Patient Conference.
  • TMA hires Mary McGowan as its new Executive Director.

2019

  • TMA received applications for 26 projects, and awarded a pilot grant of $50,000 to Yves Allenbach, MD, PhD of Sorbonne University in Paris for the project “MyotoxICI:  A study of pathomechanism of immune checkpoint inhibitor-induced myositis.”
  • A pilot grant of $200,000 was also awarded to Chelonda Johnson, MD, MHS from the University of Pennsylvania for the project “Autoimmune myositis-associated interstitial lung disease gene expression profiles.”
  • Erin M. Wilfong, MD PhD from Vanderbuilt University received $100,000 fellowship for the project “Pathological role of B cells in idiopathic inflammatory myopathies.”
  • TMA’s Annual Patient Conference was held in Minneapolis, drawing the second largest number of attendees in TMA’s history up until that date.
  • TMA nominated the Myositis Assessment and Clinical Studies Group (IMACS) for the Global Genes Rare Champion of Hope award. TMA has been involved in this important organization since its beginning more than two decades ago. IMACS, an organization of researchers and clinicians from all over the world working for the benefit of myositis patients everywhere, won the award.