CELEBRATING

20 yearsof serving myositis patients

Table of contentsA journey of determination, hope, and science..........4

Making history for myositis patients.........................12

KIT Support groups...................................................17

Messages from members and supporters..................18

The Beginning

She was a successful artist, both critically and financially, she started busi-nesses, taught others how to start businesses, brokered real estate, developed high-end sub-

divisions, and owned a business management firm. All these were minor battles, mere projects compared to the challenges Betty Curry faced at 64 years old, when she was diagnosed with inclusion-body myositis (IBM).

Betty knew from her family history to expect something like this: her father had spent part of his life in a wheelchair, and her brother had already been diagnosed with IBM. She had suspected that she, too had the disease, and she was right. What’s worse, there was no treatment, no cure, no information and no support. Betty, described by those who knew her as “a force of nature,” refused to accept the words of a well-meaning professional who told her that information about her disease was available but “too dif-ficult” to understand. These were fighting words to the woman who had built her life and career arming herself with knowledge, then charging forward.

A Journey of

DETERMINATION, HOPE and SCIENCE

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Knowledge is powerBetty was sure that if she could understand more about her disease, she

would make better decisions about her future, so she put her formidable energy and intel-ligence to the task of learning as much as possible. She was also determined to share her knowledge with other patients whose struggle was made harder by ignorance and confusion by starting an organization to provide support and education. She called her fledgling nonprofit the “Inclusion Body Myositis As-sociation,” or IBMA. From the National Organization of Rare Disorders (NORD), she got the names of 15 IBM patients who had registered, and wrote to every one. Their replies saddened her, but strength- 5

ened her resolve. Some of them had been diagnosed for more than 10 years, and still knew nothing about their disease, or their future. “I found this intolerable,” Betty said in an interview. They were simply not getting the information they needed.”

She soon had an opportunity to meet others like herself. She became part of an ongoing IBM study at the National Institutes of Health and made frequent trips from her home in the Shenandoah Valley to the NIH clinic in Bethesda, MD, a couple of hours away.

Her son, Mike — who had already been diag-nosed with an early-stage myopathy — also joined the study, which required overnight stays. They soon real-ized that they were in the midst of potential members of IBMA for days at a time. In hospital gowns and slippers, the mother-and-son team padded from hospital room to hospital room, pitching the idea of banding together for support, education and eventually better treatment for IBM patients.

A handful of NIH doctors studying IBM, volun-teered to be on the medical advisory board for Betty’s new organization. Recognized as the world’s foremost authorities on the disease, their presence lent credibil-ity to the new association, and they sent colleagues and patients to IBMA.

From the small group of members, some lead-ers emerged, and a board of directors was formed. It was time for the first publication, the IBMA “OutLook,” written in Betty’s warm. confident and humorous style. “This organization won’t cure you,” she told her sub-scribers in the Spring, 1993 edition. “But its purpose will surely provide an exchange of information, some of which will be of use to you.”

This information was dispensed from a spare bed-room with a desk and a closet. As Betty recruited family members, volunteers and interns to help, the organiza-tion clearly needed more space and moved to a down-stairs apartment when its tenant vacated.

On the road

Betty knew the key to IBMA’s growth and efficacy was to make health profes-

sionals aware of the organization, so they could contrib-ute their knowledge and refer their patients. She chose the 1994 American Academy of Neurology meeting for this debut, coming home with the names of 95 neurolo-gists grateful for anything that would offer support to patients with this rare, mysterious disease. The trip and all the fees were paid by a board member, who wrote to friends and business associates to raise the necessary $3,000.

Meanwhile, in Colorado, a group of members gathered for lunch, the first official support group meet-ing. Another first: the 12-person board of directors had a face-to-face meeting in Washington, DC and, while they were there, appeared before a Congressional caucus.

IBMA becomes MAA

With the help of the Board and the neurolo-gists, regional groups grew to nine. Myosi-

tis experts joined the IBMA medical advisory board. The organization was growing as fast as Betty could raise funds and cram desks into her tiny basement apartment. As she became aware that people with other forms of myositis needed education and support she merged IBMA with a national non-profit serving people with dermatomyositis, polymyositis and juvenile der-matomyositis. To accommodate these changes, IBMA became the Myositis Association of America (MAA) in 1996. As email and web-based information attracted

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more members and staff, MAA finally moved from Betty’s apartment to an office building in nearby Harrisonburg, VA. Betty also recognized the importance of network-ing with other nonprofits and joined the National Health Council. One of the stipulations of membership was to have a full-time, paid executive and Nancy Armentrout, a Harrisonburg businesswoman and board member, took this position, which allowed Betty to step down and enjoy other retirement projects.

MAA funds research

With the death of Dr. Martha Bishop, an IBM patient, in 2001, MAA’s potential

changed dramatically. An unassuming and thrifty librarian, Dr. Bishop left to MAA an estate of $2 million for research, allowing MAA to launch its research program. MAA invited every medical school in the country, every physician in its grow-ing database and subscribers to appropriate med-ical journals, to apply for research grants and fellowships. It was an historic moment as the neighborhood mailman delivered the first of many stacks of research applications to MAA’s office. Veteran myositis specialists Drs. Walter Bradley and Marinos Dalakas, together with board chairman Earl Klein, began the process that would lead to the review and award of funds for research.

A new director, a new name and a new home

During the second half of 2002, the board hired Bob Goldberg, the former Vice President of the National Health Council, to be MAA’s Executive Director. Goldberg set up an office for MAA in Wash-

ington, DC, to increase its visibility and advocacy efforts.

Thanks to the Internet and the growing ease of global communications, MAA had become more interna-tional in character. Physicians and researchers worldwide were applying for grants, interacting with each other, and contacting MAA for patient materials. Patients from around the world were coming to the U.S. to attend MAA’s Annual Conference, now a yearly event held in different regions of the country. It was time to go global and, as 2003 dawned, the organization changed its name to The Myositis Association and expanded the size of its board of directors. Electronic newsletters were developed for members and physicians to supplement the re-designed “OutLook,” and live online discussions with medical professionals were planned.

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THE SECOND DECADE:TMA adds to the world’s understanding of myositis A worldwide partnership

As TMA began to fund research proposals, it became clear that myositis experts would need to reach consensus on several issues in order to judge the success of any treatment: what factors could be clearly

measured to judge disease activity and damage; and what factors would constitute improvement. In different loca-tions around the country and around the world, rheumatologists, neurologists, dermatologists and pediatricians came together to do this painstaking basic work. Consensus was reached, but this collegial effort had other far-reaching results. Hitherto isolated according to geography and specialty, myositis experts began to freely share their own experiences and work together to support the promising research of others. This belief in a common mission grew when TMA’s medical advisory board, board of directors and research committee began to meet face- to-face in 2003.

In 2010, TMA’s medical advisors began meeting during TMA’s Annual Patient Conference so TMA mem-bers could now hear firsthand about the medical advisors’ individual research interests. The advisors also shared information with their colleagues in a yearly TMA myositis symposium held in conjunction with the Patient Con-ference.

TMA’s medical advisors were now also participating in a series of live online discussions, with an over-whelmingly positive response from TMA’s membership. Members could submit questions in advance, or in the course of the live event. Transcripts of the sessions were posted on TMA’s website. By 2013, TMA had presented dozens of live discussions, on topics as diverse as gene therapy, physical therapy, skin treatment, heart disease, dysphagia and many more.

TMA’s medical advisors also allowed their Conference presentations — and in some cases, live videos — to be linked on the TMA website for the benefit of all myositis patients.

New frontiers in medicine

Knowledge gained from the use of new drugs to treat rheumatoid arthritis, helped to further understand-ing of myositis. In the second decade of TMA’s growth, treatment became more targeted towards each

individual case. The use of intravenous immunoglobulin grew, especially for dermatomyositis. Physicians started to prefer treating patients with a number of different agents in combination, adding disease-modifying anti-rheu-matic drugs and biologics to the existing widespread use of prednisone.

Researchers found that there was great variation between myositis patients, even those with the same dis-ease type. Disease course, risk factors and even the best treatments could be better pinpointed by knowing each patient’s specific antibodies.

In 2005, recruitment began for a study of “Rituximab in Myositis.” This was a randomized, double-blind, placebo-phase, multi-center, phase 2 trial of intravenous rituximab in the treatment of refractory myositis in adults and children. Many of TMA’s medical advisors ran the studies for their respective insti-tutions. More than 30 centers were involved, several of them international. The results, released in 2012, were hopeful but not conclusive.

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Treatment for inclusion-body myositis continued to elude researchers, although TMA funded many stud-ies laying the groundwork for potentially effective therapy. In 2006, TMA awarded the first of several grants for a study of applying gene therapy to inclusion-body myositis. This trial is ongoing.

On the eve of TMA’s 20th anniversary, the FDA granted “breakthrough therapy designation” for BYM338 (bimagrumab) to Novartis for inclusion body myositis. Bimagrumab showed promise in a study of IBM patients. If approved, following additional trials, it will be the first ever therapy for IBM.

Projects approved and funded by TMA during the past 11 years have added greatly to the body of knowledge about myositis. TMA researchers and fellows have:

n Developed a myositis research cohort following more than 100 patients to find out why cholesterol functions are abnor-mal in myositis patients and how that may contribute to cardiovascular risk.

n Improved animal models of myositis.

n Recruited myositis patients for a study of structural and functional alterations in metabolism as patients are treated.

n Explored innate immunity in animals and humans.

n Identified the symptoms, complications and outcomes of patients with differing auto-antibodies.

n Examined adult stem cells associated with blood vessels and their potential for repairing damaged and inflamed skeletal muscle.

n Identified the different mechanisms in the way myositis affects the muscles and the way it affects the skin of juvenile patients.

n Studied the surface molecules of muscles in hereditary forms of inclusion-body myositis to understand and prevent the destruction and loss of muscle fibers.

n Examined the effects of diet and exercise as well as effects of treatment with com-mon anti-inflammatory drugs in mouse models of inclusion-body myositis.

n Compared people who developed my-ositis during active duty service in the military with those who did not develop an autoimmune disease to find the fac-tors that might have led to their disease.

n Created a clinical database and tracked follow-up data from a large popula-tion of patients with juvenile myositis, including investigation of risk and protective factors and a newly-identified auto-antibody associated with juvenile and adult dermatomyositis.

n Discovered why conventional auto-immune treatment is not effective in inclusion-body myositis.

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n Identified contributing factors, in addi-tion to inflammation, to muscle weak-ness in myositis.

n Investigated the role of a protein released by white blood cells in the disease pro-cess of polymyositis.

n Studied the role of the loss of small blood vessels and consequent low oxy-gen content and weakness in muscles of myositis patients.

n Proved that muscle strength as well as inflammation in myositis patients could be improved by exercise.

n Worked with inclusion-body myositis patients to see how methods of bracing could improve movement and stability.

n Established an international pro-gram with long-term follow-up of patients with juvenile forms

of myositis and their parents to discover factors that predict eventual outcomes.

n Recruited juvenile patients from 46 countries to identify the best treatment with the least toxic effects.

n Proved that gene delivery of follistatin to the quadriceps of non-human primates results in larger muscles with greater strength.

n Cleared regulatory hurdles, recruited and began treatment of IBM patients for the first human follistatin trial.

n Shown that the pathology of inclusion-body myositis muscle has several impor-tant similarities to Alzheimer’s disease brain.

n Identified the important role that mis-folded proteins play in causing muscle degeneration in inclusion-body myositis.10

Working for people with myositis At the same time that TMA has supported research, it has also supported its members and families.

TMA’s support group network has grown and matured, and its online support network now includes Facebook and Twitter as well as TMA’s online forums. There is now a national “Myositis Awareness Day” and state-proclaimed days to promote the understanding of myositis. TMA regularly advocates — both on its own and with other patient groups — for appropriate insurance coverage for medications and assistive devices.

In 2011, TMA stopped charging a membership fee to enable anyone who has the disease to access TMA’s

information and resources.

In 2012 and 2013, TMA offered scholarships to its Annual Patient Conference based on financial need. So far, 41 patients have received funding through this program.

What’s ahead?

While it is difficult to predict what the future holds for TMA and myositis patients, the scope and reach of TMA’s programs and myositis community are sure to expand. TMA’s Medical Advisory Board con-

tinues to add members from outside the United States. A TMA support group in Australia has now grown to the point that it is an independent entity which had over 100 patients attend its first-ever patient conference in 2013. MYOVISION, a TMA-funded patient registry, now contains data from nearly 2,000 myositis patients. Analysis of the registry’s data will soon be completed and made available to researchers to assist their efforts in finding better treatments for myositis. An international consensus conference is now planned for 2014 to confirm the measures of improvement and damage that were originally conceived in a workshop funded by TMA.

From its humble beginnings in 1993, the myositis organization has grown substantially and looks to achieve much more in the years ahead. Its focus remains education, research, support and advocacy. TMA’s staff, Board of Directors and Medical Advisory Board remain committed to working tirelessly until the ultimate goal of TMA is achieved – a cure for all forms of myositis.

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Making history

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1993n Betty Curry organizes the Inclusion Body Myositis Association (IBMA).n NORD shares 15 patient names for first mailing list.n Nancy Crow donates $500 for filing fees to get IBMA off the ground.n First IBMA Outlook published.

1994n Betty hires part-time staff to help with operations.n Betty and Bill Babyak meet, with Bill becoming one of the first local representa-

tives.n Board Member Madeline Sabia raises funds for booth at American Academy of

Neurology meeting, bringing 95 new physicians to IBMA mailing list.n Board meets for first face-to-face gathering with 12 members.

1995n First medical symposium is held in October in Herndon, VA.n First member conference follows symposium, with over 100 members attending.n IBMA is given a page on a neurology web site sponsored by Neil Busis, MD, and

grows by more than 100 percent.

1996n By joining with NMA (National Myositis Association) IBMA expands to include all

forms of myopathies and changes its name to the Myositis Association of America (MAA).

n Drs. Fred Miller, Chester Oddis, Lauren Pachman and Lisa Rider, who were NMA advisors, become official MAA advisors.

1997n MAA develops its own web site to reach even more patients, health professionals.n Conference offers activities for JM parents, families, patients.

1998n First JDM Messenger published as a separate newsletter to serve juvenile

population, with Monica Luke acting as first support group representative for families affected by JM.

n Offices move to larger location in Harrisonburg.

for myositis patients

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n Dr. Lisa Rider becomes first JM representative on Conference Medical Panel.n Board of Directors introduces idea of 50 for 5k, a fundraising campaign for 50 members to raise $5000 each

for the Association.n MAA joins the Autoimmune Coalition and attends the Coalition’s first meeting at NIH.n Betty Curry resigns as President; Nancy Armentrout, past Board Treasurer, becomes President.

1999n “Spread the Word” campaign begins to increase recognition of myositis in health care and local communities.

2000n First strategic plan developed, which expands mission to include advocacy and research. n 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.

2001n Janice Goodell organizes first Myositis Awareness Day on September 21 in Massachusetts, with a walkathon

to promote this effort.n Annual Conference held in San Diego, becoming first to be held outside Washington, DC area.n MAA receives $2 million bequest for research from a Canadian MAA member.

2002n Nancy Armentrout resigns in March; Bob Goldberg is hired in August as Executive Director.n Board votes to change name from MAA to The Myositis Association (TMA) to recognize that myositis is a

worldwide concern.n TMA opens office in Washington, DC to increase exposure, advocacy efforts.n First round of TMA research grants to scientists around the world, with

close to $1 million in grants approved.

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2003n TMA celebrates 10 years of service to all affected by the inflammatory myopathies.n TMA calls on Congress to fully fund the NIH Autoimmune Research Plan.n TMA produces e-newsletters for patients, physicians and KIT Area Representatives.n TMA publishes special issue, Outlook Extra, focusing on products, treatment options and research.n Offices officially move from Harrisonburg, VA to Washington, DC on December 1.

2004n TMA produces Research Reporter, research newsletter for the layperson.n TMA conducts first-ever conference devoted entirely to JM issues, clinical, psychological and social.n TMA Annual Conference in Las Vegas exceeds 300 attendees, most ever for a TMA conference by far.n TMA creates My TMA on its web site to give members, KIT Area Representatives, and Board members in-

stant access to comprehensive information and direct access to TMA database.

2005n TMA holds, in collaboration with MDA, an international s-IBM conference to focus on treatments, limited

to leading s-IBM researchers worldwide.n TMA holds 5 first-ever TMA regional JM events, attracting 60 JM families.n TMA elects new officers for Medical Advisory Board and adds first international member.n Milestone 460-page reference book for juvenile myositis nears completion, including contributions from

more than 70 health professionals.

2006n Fabio, world famous male model and actor, agrees to help bring attention to myositis.n TMA holds first-ever briefing of Capitol Hill to educate Members of Congress about myositis.n Congress recognizes September 21 as Myositis Awareness Day.n A special Neurology Supplement, devoted exclusive to s-IBM, is distributed to 22,000 neurologists world-

wide.

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2007n Anonymous donor offers to match research donations up to $500,000 in 2007.n TMA’s Dues Devoted to Discovery initiative dedicates $20.07 of each $35 membership to research.n Redesigned TMA web site launched with many new features and enhancements.n TMA continues advocacy in Washington for more funding of myositis research and a resolution of the IVIG

reimbursement crisis.n Myositis and You is published and distributed to all pediatric rheumatologists. Companion publication, con-

taining compilation of patient stories, is assembled for publication.n Myositis featured in New York Times, Retirement Living Channel, and Good Morning America.

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

2009n TMA receives from Congress $1 million earmark to explore the relationship between the environment and

myositis.n Matching Research Challenge results in $400,000 additional research fundsn Two thoroughbred racehorses named with the word “myositis” included in their names to draw attention to

the disease.n TMA awards an additional grant of $200,000 to fund gene therapy research related to myositis.n Decision made to include Medical Advisory Board at TMA Annual Patient Conference.n Frequency of online discussions with myositis experts expanded to every other month.n News and Announcements Forum added to online Community Forum.n Two members added to TMA Medical Advisory Board.

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2010n TMA begins assembling a comprehensive registry of myositis patients to study

causes of myositis and aid researchers in developing better treatments and finding a cure.

n TMA awards an additional $100,000 in research grants to fund a myositis fellow at Washington University and a researcher at UCLA.

n TMA makes available podcasts with myositis experts through its website for the first time.

n TMA adds 4 new members to its Board of Directors and two new members to its Medi-cal Advisory Board.

n Medical Advisory Board recommends two grant applications for funding related to environmental factors and myositis.

n TMA receives its largest single unrestricted donation of $100,000 from a living donor.

2011n TMA is awarded $1 million from Department of Defense to study potential environmental

triggers among military personnel and the public.n Over 2,000 surveys are received from myositis patients for inclusion in MYOVISION,

a patient registry project between TMA and NIH.n TMA eliminates membership dues to enable all myositis patients to receive

information and member benefits regardless of their financial situation.n TMA adds 5 new members to its Board of Directors and 5 new members to its

Medical Advisory Board.

2012n Myositis Symposium for physicians is added to Annual Patient Conference to facilitate

collaboration between specialties.n MYOVISION patient registry is closed and cleansing of data and analysis begins.n Scholarships are provided to 29 people to attend the 2012 Annual Patient Conference.n Mission of TMA is updated to emphasize more interaction between physician and patient

communities.n TMA net assets increase nearly 30%.

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Current

Australia, New ZealandAZ SouthernCA Los AngelesCA NorthernCA San DiegoCentral FLCOCTFL NortheastFL SoutheastFL SouthwestGAILINKS, Western MO

KYMA, RIMD, DE, DC, VA NorthernMIMid-AmericaMNMO, Southern ILMO, SWNCCentral NCNENJNM, TX NorthwestNY City/Long IslandNY State

OHORPA EasternPA PhiladelphiaPA Western/WV NortheastSCTNTX HoustonTX DallasTX San AntonioVA, WV, NC Northeast

WA

WI

Those with myositis face the difficulty of dealing with a chronic illness, plus the extra challenge of having a rare disease most people have never heard of. Because the disease is so rare, it’s hard to find others who understand what you are going through and the challenges posed by myositis. TMA helps resolve this problem through its Keep In Touch (KIT) member support network. KIT groups offer members the chance to join with others in their area and share mutual support, friendship and ideas.

TMA Support Groups

Congratulations to TMA for 20 Years of Helping Myositis Patients and Their Families

From The Southwest Florida Myositis KIT “We Care so Come and Share”

Making new friendsWhen “I” is replaced with “We”, Illness becomes wellness

In our six years, we have raised over $60,000 for TMA

Our KIT has been featured in several TV interviews and numerous newspaper articles

First meeting: May 17, 2007

Attendance: 3 people

Current member list: 157

Average meeting attendance: 40

Photo taken at 2012 TMA Patient Conference, Orlando, FL, with many of our KIT members in attendance.

Our members come from near and far. Some drive over 2 hours and make attending our KIT a weekend event.

Holiday Parties with lots of fun, food and presents

At each anniversary of our first meeting we celebrate with cake; Chocolate of course!

We produce a brochure telling about our KIT, distributed to many local doctors.

At each quarterly meeting we not only have breakouts for each myositis dis-ease but also for our caregivers

In March, 2011 we welcomed Fabio to a weekend of fundraising parties and a motorcycle poker run

Thanks to TMA Staff for assistance and support

With often confusing information avail-able for myositis patients, especially on the Internet, TMA provides clarity and support for those anxious moments that are often a natural part of having a chronic, rare disease. Thank you, TMA!

— Lisa Christopher-Stine, MD, MPH

CongrATuLATIonS TMA!

Thanks to everyone that make it possible for us to connect, share, hope, and care. May we reach out to others. May newcomers stum-ble upon TMA to know they are not isolated and never walk alone. Blessings, Ms. B. Bevcook

TMA’s 20th Anniversary is truly worthy of celebration. When I was diagnosed with IBM in 1997, TMA was a tiny operation with a mod-est capability to provide information about myositis. There was no meaningful research to understand or treat the diseases. Since then, the organization has grown more than tenfold. It has expanded capa-bilities to inform and support persons afflicted with myositis and it has influenced and funded important research. Most important, it has given us hope. Heartfelt thanks to Bob Goldberg, the staff, the many talented volunteers who have served on TMA’s Board of Directors and its Medical Advisory Board, and to the generous financial supporters who have helped TMA grow for two decades.

Earl KleinBoard Member 2000-2005, 2008-2011Board Chair 2001-2004

Pat & Peggy Zenner wish on the occasion of TMA’s 20th Anniversary to thank The Myositis Association staff, Board of Directors, Medical Advisory Board, KIT support group leaders, committee chairs and all those who have made the past 20 years possible. The progress made toward better treatments and a cure for all forms of myositis is truly encouraging. The support pro-vided to patients and their caregiv-ers has been exceptional. We look forward to more good news in the years ahead!

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Here’s to another 20 years!

The Myositis Association1737 King Street, Suite 600

Alexandria, VA 22314800-821-7356

TMA@myositis.org

www.myositis.org