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.