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2018 Top-Rated Nonprofit

The Myositis Association

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Nonprofit Overview

Causes: Health, Nerve, Muscle & Bone Diseases, Voluntary Health Associations & Medical Disciplines

Mission: The mission of the Myositis Association is to: - Provide support to myositis patients and their families - Provide connections between the Medical Advisory Board and the general medical and patient communities - Increase funding to support myositis research

Results: There is greater awareness of the disease among physicians; there is better understanding among physicians about how to treat the disease; there are new treatments for the disease that did not exist before; there are research trials underway to find better treatments; TMA has funded 35 research projects related to myositis in the past 10 years

Target demographics: Adults and children -- patients, family members, and caregivers. Medical and therapeutic professionals who work with these patients.

Direct beneficiaries per year: 3,000 patients who are TMA members and 1100 physicians treating myositis patients

Geographic areas served: Primarily North America with some partners in Europe and Australia

Programs: Education The Annual Conference brings together myositis patients with health professionals who specialize in myositis and related fields. This event features a panel of medical experts and sessions on treatments, promising research, coping strategies, exercise techniques, and more. Find presentations from previous Conferences. TMA publications —both in print and electronic—present information on diagnosis, treatments, research news, and other relevant topics that help patients and caregivers learn what they need to address their individual health care concerns. Support Support groups offer members the chance to share their feelings and discuss their concerns with people in similar situations. These groups encourage an atmosphere of communication and compassion. Advocacy Public recognition of myositis, increased research funding, greater access to care, and better coverage and reimbursement for treatments—TMA gives you the tools to make a difference. Research TMA provides funding to emerging and established researchers who are seeking answers to the mysteries surrounding myositis. TMA is committed to continuing its research program to increase understanding, find better treatments and, ultimately, a cure.

Community Stories

51 Stories from Volunteers, Donors & Supporters

Donor

Rating: 5

I am a rheumatologist who cares for many patients with myositis. The work TMA does for patients and their families and loved ones is tremendous. The organization provides education and support services and advocates for patients with these rare disorders. In addition they work to educate physicians and medical students about the diseases to raise awareness and promote earlier diagnoses. I am proud to be a donor and member of TMA’s Medical Advisory Board because of all of the excellent work they do.

Pilyog

Board Member

Rating: 5

I have been a patient member for 8 years and just completed 7 years on the Board of Directors. This organization has been life-changing for me in so many ways. The dedication of the staff creating amazing annual patient conferences and the expertise of the world-class Medical Advisory Board place this organization in such high esteem for what it accomplishes for myositis sufferers and their families. Everyone I meet has been so positively touched by its association with TMA,

Previous Stories

Client Served

Rating: 5

I became a member almost 10 years ago and have since also had the honor of serving on the board of directors. This amazing organization has changed the lives of countless people, both patients, caregivers and healthcare providers. TMA not only provides education and awareness, but tremendous emotional support as well as funding much-needed research for this rare set of diseases.

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Board Member

Rating: 5

TMA is truly focused on patients with Myositis and their care partners. They work diligently to provide a patient focused conference each year which allows them to hear from the best Myositis experts in the world. This experience is priceless and empowers those battling the rare disease to get answers and focus on their individual needs. In addition, they get to connect with others who can relate to the challenges Myositis warriors face on a daily basis. Thank you for all you do!

Client Served

Rating: 5

TMA - The Myositis Association is a power-house geared towards helping individuals diagnosed with a form of myositis; whether it is Dermatomyositis (DM), Polymyositis (PM), Inclusion Body Myositis (IBM) or Juvenile Dermatomyositis (JDM). With doctors and scientists on its panel of advisors, the disease is being studied and trials being done to help find a cure. The volunteers and workers alike work tirelessly to bring awareness and help to those in need. Their website hosts a gauntlet of information with panel from their annual conference to doctor/patient question/answer sessions.

3 jamathews47

Board Member

Rating: 5

The Myositis Association (TMA) provides an invaluable service to its members. Their Medical Advisory Board is comprised of 23 of the World’s leading medical experts in myositis virtually all of who are available at the Annual Conference to give presentations and answer one-on-one questions. TMA sponsors local support groups and offers on line presentations that everyone can attend. It offers grants for promising research and fellowships to young researchers. Its newly upgraded website is a fountain of information. TMA’s Board of Directors is comprised of dedicated individuals with varying backgrounds and who volunteer their time. As a myositis patient, I completely appreciate all that TMA does for the myositis community. As a medical professional, I am thankful for the resources available. As a Board member, I am proud to be associated with such fine people and an outstanding organization.

Previous Stories

Board Member

Rating: 5

I was diagnosed with sporadic inclusion body myositis in late 2015. I was desperate to find others who had this rare disease and any information I could get my hands on. The Myositis Association filled both roles. The annual patient conference allowed me to meet others and the Medical Advisory Board gave very informational presentations. There is also a state based support group that has been very helpful. Through these connections, I was asked to consider serving on the Board. I enthusiastically agreed and have enjoyed helping others who are were I used to be.

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Client Served

Rating: 5

It is frightening to have a rare disease! Where to get help? How to find a doctor? What to tell your family? These are questions a myositis patient has when first diagnosed. And when they find TMA, many of those questions are answered and all of a sudden they don't feel so alone. I was diagnosed in 1999 and thought I knew all about my form of myositis. But thanks to one of TMA's medical board doctors, I discovered that in reality I had a different form and it needed a different treatment. What a comfort to know this organization is supportive of us, the individual patients as we deal with our disease.

Previous Stories

General Member of the Public

Rating: 5

Finding the resources to help me deal with my rare disease, Immune Mediated Necrotizing Myopathy, is not easy! Luckily, TMA's medical advisory board is unbelievably available for advice and consulting. And when TMA holds its annual patient conference, being able to actually meet and talk with these world-renowned medical experts is as they say 'priceless'. I don't know what I'd do if i had to face my disease without TMA's help.

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Client Served

Rating: 5

When I was first diagnosed with myositis eighteen years ago, The Myositis Association was instrumental in helping me to understand more about this rare disease. As a result, during my numerous emergency room visits, I was able to explain the disease to both doctors and nurses who had no knowledge about myositis. I had to spell it and explain it. In addition, through their Keeping In Touch (KIT) organization I was able to connect with another myositis patient which helped close the gap of isolation I felt. An excellent organization which provides a wealth of information about myositis.

Volunteer

Rating: 5

As a person with myositis, I am grateful to The Myositis Association (TMA) for their wonderful work in educating people about this rare and debilitating disease. Also, TMA supports research by medical experts who are working diligently to find the causes, treatments and cures for all forms of myositis. Without TMA there would be little hope for those of us with this terrible disease.

Donor

Rating: 5

My husband was diagnosed with Inclusion Body Myositis in 2009. In addition to having no treatment or cure, this is a very rare disease unfamiliar to most in the medical community. The Myositis Association (TMA) has worked diligently to increase the awareness in the medical community. TMA has developed publications about the various forms of myositis which can be provided to doctors. They hold symposiums for the medical community on a regular basis, and also go to medical schools to educate future doctors about myositis. In addition, TMA has provided more funding for myositis research than any other organization. As a caregiver for a myositis patient, they have been instrumental in connecting me with others dealing with mysositis to provide support and tips about living with myositis. The hold an annual conference for myositis patients which is said to be exceptionally valuable by those who attend. TMA is truly an outstanding organization.

John M.3

Board Member

Rating: 5

Great fund raiser for research in myositis, support for patients and doctors.

Previous Stories

Board Member

Rating: 5

I believe TMA to be the world leader in both research and education for the deadly disease. This is usually indicative of a paid organization but this is a non-profit!

Board Member

Rating: 5

I became aware of this Association when I was first diagnosed with Myositis. It provided me with a tremendous amount of information to help me cope. Since then it has been the emotional support and education about my condition. It has provided me with access to Doctors and researchers that are renowned in this field. It has always treated me with dignity and respect. As a former Board member I can attest to the excellence of this organization.

1

Client Served

Rating: 5

I am proud to be affiliated with The Myositis Association. I have attended the annual gatherings in various areas of the United States and the discussion groups, workshops, educational presentations were prepared well and extremely enlightening. The local KIT groups are supportive to those suffering with various forms of myositis, such as polymyositis, dermatomyositis and inclusion body myositis. The local KIT group in Maryland has a big fundraiser in October and the head of The Myositis Association, Bob Goldberg attends. Bob Goldberg has been approachable and has done a beautiful job for all the people that suffer with this disease. Inclusion Body Myositis (IBM) is so new there is no known treatment for it that is why donations for clinical studies to find a treatment and to understand the disease is so important. I have IBM and Polymyositis (PM). The treatment for PM has slowed the disease down but IBM continues to destroy all the muscles in my body. I have to thank many of the people in the Alexandria, VA office for all their efforts, especially Bob Goldberg. I have mixed feelings about his retirement; I am happy for him but will miss him very much. Thank you Bob for all your achievements and kindnesses. You have done a fantastic job. Ann Huber, Fallston, MD

Board Member

Rating: 5

TMA has greatly grown over the years in both size and services. We strive to meets the needs, and improve the lives, of patients, family, caregivers, and physicians, all associated with myositis diseases. Please help us in spreading awareness of myositis diseases, and caring for all those involved!

Client Served

Rating: 5

It was scary as a patient, getting sick with a rare disease, and not having any doctor that could tell me what the problem was, what would happen to me, or what I could do about it. (or even worse, tell me there was nothing wrong with me) When I found the Myositis Association, I finally got insight and information I needed to get in the right direction of seeing the right doctors, to finally got a diagnosis. The relief was indescribable. I really appreciate TMA and the info and support they provide. The annual conference is invaluable in meeting other patients with the same rare diseases, and feeling normal.

Professional with expertise in this field

Rating: 5

As a rheumatologist who cares for many patients with various forms of myositis, I can't say enough about the work that the Myositis Association does for our patients. They sponsor a wonderful annual patient conference. They fund research into myositis. They provide physician education about these rare diseases. And on and on.... An outstanding organization on all fronts.

Board Member

Rating: 5

TMA helped my father when he had IBM. He was able to talk and email with TMA to get information that he could not get from his doctors and physical therapists at the time. They hold a patient conference every year that he was never able to attend but I have now attended for 7 years. They help so many patients and caregivers. It is a wonderful event that brings people together to learn about their diseases from experts, doctors, and physical therapists. It is a great organization with a very caring staff working to advance treatments for Myositis diseases and to spread awareness.

Terry57

Client Served

Rating: 5

I am a spouse of a person with Myositis. We have benefited greatly over the years as a source of information, inspiration and support as we deal with this life-altering, debilitating disease currently without a cure or treatment. The Myositis Association (TMA), with its Medical Advisory board of doctors and researchers around the world, provides us with hope with its funding of research grants and fellowships. TMA provides a network of support groups throughout the country, and around the world, that also aids and supports its members. In addition, its annual conference, attended by over 500 patients and caregivers provides a forum for dialogue among patients, care-givers, and the medical community. TMA is our life-raft in a sea misinformation and personal disease-related stress.

Previous Stories

Client Served

Rating: 5

TMA continues to provide valuable information and support to me as I navigate this rare disease that afflicts my wife. As a caregiver the relationships that I have made via my association with TMA have been invaluable. The annual patient conferences offered by TMA to its membership provide the latest information on treatments, research efforts, and coping strategies. These conferences also provide an avenue for personal contact with others with the various forms of the disease as well providing opportunities to meet with the medical community members specializing in Myositis.

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Client Served

Rating: 5

The dogged pursuit of providing support to the patients and research funding for the medical community makes this a blessed charity. All of the expertise provided by the Medical Advisory Board is invaluable.

Patrick45

Board Member

Rating: 5

A well managed organization that does great work supporting patients, caregivers and health professionals.

Previous Stories

Board Member

Rating: 5

With a small staff and budget this organization provides outstanding educational and emotional services to patients and caregivers. They also have assembled a world class medical advisory board who is helping to create awareness of this rare disease and conducts research.

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Augie D.

Board Member

Rating: 5

TMA brought their members the latest in information and research in the field of myositis at a recent patient conference. They have been a leader in support of patient care for the terrible disease.

1 Burly Man

Volunteer

Rating: 5

I was diagnosed in February 2010 with polymyositis, and six months later lupus. In 2011 I started a wellness campaign to gain back my mind, body, and spirit, and help others. It was around this time I reached out to TMA. They responded and offered their time and effort to help me achieve my goals, and help spread awareness to others. I Can't thank them enough for what they have done to help myself and others like me.

Client Served

Rating: 5

My husband has inclusion body myositis and we have found TMA to be so very helpful in dealing with this disease. The newsletters, support groups and the yearly conference has been a tremendous resource for us as this disease progresses. We had never heard of IBM and knowing that we have support through TMA has made us feel less isolated.

Volunteer

Rating: 5

Dermatomyositis with ILD is rare and there is No Cure! Most die within 5-7 years after being diagnosed. I am beating the odds am going on my 12 year. This terrible disease effects my lungs, joints, muscles and everyday living.
This past September I was able to go the Myositis Assocation Conference in Reno, NV. My husband went with me and what an experience. the class sessions were very informative, meeting others whom have Myositis, doctors from all over the world. There were caregiver classes which helped him understand what I'm going through and I learned what he is going through. We left Reno, feeling you don't give up, you fight to keep on living.

Volunteer

Rating: 5

The Myositis Association has been a world of help and a lifeline for my wife and myself since her diagnosis with Polymyositis in 2009. The information from their website, the sponsored local support groups, as well as the annual national patient conferences have made the journey into effective treatment so much easier. I cannot imagine how we could have done this without the very valuable assistance of The Myositis Association.

Volunteer

Rating: 5

In 2008 I was FINALLY diagnosed with a rare disease that I had never heard of before. Because of the long journey I had been on, in search of a diagnosis, it was evident that the doctors also were not very familiar with it.
I searched the internet to find out all that I could about this disease called Myositis. There I found The Myositis Association. Their web site offered an abundence of information, but was a lot to absorb.
I signed up to be part of a support group, but found that my area didn't have a suppoert group leader. My wife talked me into volunteering for that position. I fouund that the association was very helpful to give me the information that I needed to start up a group in our large area. This turned out to be very therapeutic for me.
Then I went to my first Annual Patient Conference, where I met many more people that shared one form or another of the same disease that I had. We visited and found that our stories, although different were very similar. I also met the TMA staff and found them to be very dedicated and caring people. You could tell right away that this was so much more than just a job for them. I also met the board of directors, and the medical advisory board. I went to break out sessions where I learned more about my disease, as well as what research and clinical trials were ging on. Learned that The Myositis Association had funded a lot of the research that is going on, to help treat and look for a cure for Myositis.
The Myositis Association has been a life boat in the middle of a stormy sea for me.

Board Member

Rating: 5

I've had Inclusion body myositis diagnosed for 6 years. The educational resources of TMA have been very helpful. I have attended support groups locally and am about to be at my 4th annual nation-wide patient conference.

Board Member

Rating: 5

Six years ago I was diagnosed with Myositis, a rare chronic disease. My doctors didn't have much information for me so I went to the internet. I found The Myositis Association (TMA). Their website contained years of information, research news, clinical trials and resources to assist me in my quest for information about my disease.
For the last six years, TMA has been the top source for my information about my disease. They have provided the latest updates and information on research, medication, and the latest clinical trial opportunities. TMA provides its members not only with information, but support by bring together its members at their annual patient conference. This conference brings patients, physicians, caretakers, and vendors together to share advancements, information, and ideas.
A lot of people owe the quality of their lives to TMA.

Carla26

Volunteer

Rating: 4

My husband suffers from Inclusion Body Myosotis, and was diagnosed 14 years ago. The TMA Had provided us both with support and information. It has been very helpful to me as a care giver and to him as a patient. The staff is always helpful and responsive and the medical advisory board is excellent.

Board Member

Rating: 5

My wife suffers from Inclusion Body Myositis (IBM). Through membership in TMA and in our local support group we have learned so much about this rare disease that we had never heard of prior to her diagnosis. As a volunteer member of the TMA board of directors I am aware of how the scarce resources of the organization are used and, in my opinion, the organization is very well run. The annual patient conference is a wealth of information and support for myositis patients and caregivers. The quarterly newsletters and random e-mails are full of useful information directed at this rare disease.

Donor

Rating: 5

I was diagnosed with inclusion body myositis (IBM) five years ago. It took almost two years to obtain a correct diagnosis, because it is such a rare disease, and the average practitioner does not come across it. The Myositis Association (TMA) is the only credible organization in the country that is devoted solely to assisting patients afflicted with myositis and their family and friends. TMA is transparent, posting all relevant information about its operations, including financial information, and it operates successfully on a shoestring. It funds medical research, patient and community outreach, education, and non-political advocacy.

John166

Client Served

Rating: 5

I have had Myositis for over 14 years. About 8 years a go was diagnosed with IBM. Without the help and support of TMA I believe our disease would be in the dark ages in terms of knowledge and research. In addition to being a patient, I am also active as a fund raiser and support group leader.

John schell

Client Served

Rating: 5

I have had DM for over 30 years. When TMA began it was the only source of information available to me. I have since joined my local KIT (Keep In Touch) and have found it a lifesaver. To be able to meet with other people with myositis and share our experiences and joys is so important. Their website, conference and newsletter do so much to educate paitents and their families as well as the general public and the doctors who treat us.

Donor

Rating: 5

My husband was diagnosed with inclusion body myositis over 20 years ago. TMA was the only source of information at that time.(pre internet) We have watched it take on more in the way of creating awareness and advocacy for these diseases. In recent years the amount of funding for research and the grants given are a great step forward toward understqnding and curing this rare disease. My family believes so strongly in TMA that we fundraise every year.

Board Member

Rating: 5

My father was diagnosed with IBM about 19 years ago, and he passed away from complications 2 years ago. During the last 10 years of his life The Myositis Association was the only group that was able to give him information about his disease. He was always so thankful for the information he received in their newsletters and online web site. He also found comfort in knowing he was not alone in the world suffering from this rare disease. My siblings and I went to The Myositis Association Conference the year my father died and we met so many wonderful people who understood what we had been through as a family. I will continue to contribute to this great organization and volunteer with them as they try help all of those who suffer from myositis diseases. Their annual conference is a wonderful gathering for those who are afflicted with these diseases, and their caregivers.

Donor

Rating: 5

TMA was very valuable to me when I was first diagnosed with IB Myositis in 2009. I had many questions about the progression of the disease and what patients were still capable of doing. The website was very helpful in answering many of these questions. The support provided in the way of articles on research for a cure are very encouraging also.

Client Served

Rating: 5

The Myositis Association is the only organization in the world that hosts an annual conference JUST FOR myositis patients. They provide direct support as well as organizing support groups for the myositis community. I have Inclusion Body Myositis and I have learned more from TMA than from my local doctors. The doctors on their Medical Advisory Board actually answer emails!

2

General Member of the Public

Rating: 1

Although my family member has myositis, I say please, please do not donate to the Myositis Association. It is an outrage that they get three stars. The Director's lofty salary represents 20% of the revenues! It's shameful how a few people who control this organization are profiteering from the ruse that it is charity devoted to help sick people. Your money will not help myositis patients one iota. Donate to responsible, impassioned organizations. Charity Navigator really misses the mark on TMA.

Review from CharityNavigator