Oops! You must enter a search term greater than 3 characters.

Invite reviews

Invite friends and colleagues to share their experiences with this nonprofit
11 Reviews
1234.636365
Previous | 1 2 |
Write A Review
June 26, 2013

more

June 26, 2013

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.

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

June 9, 2013

more

June 9, 2013

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.

Ways to make it better...

If I had to make changes to this organization, I would...

Continue doing what it is doing.

More feedback...

When was your last experience with this nonprofit?

2013

May 8, 2013

more

May 8, 2013

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

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

May 8, 2013

more

May 8, 2013

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.

More feedback...

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

May 2, 2013

more

May 2, 2013

I was originally told about TMA 5 years ago by my Pilates teacher, who was working on getting me stronger after my diagnosis with dermatomyositis and trying to learn about the disease to help me. I am so thankful she found it! I have since joined TMA, attended four conferences and made many friends. The small staff does an amazing job with its limited resources. The highly educational yearly conferences have been overwhelmingly appreciated by all attendees, with the added bonus of a very committed and knowledgable medical advisory board (who are actually involved in research and patient care, not just names on a list). The website not only has a wealth of information, but has access to webinars and a community forum where individuals can pose questions and get answers and tips. And due to the many support groups (called KIT - Keep In Touch groups), nearly anyone in the country can find a local outlet to meet others with the same condition, a HUGE deal with such rare conditions. It has made a big difference in my life.

More feedback...

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

May 2, 2013

more

May 2, 2013

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.

More feedback...

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

May 1, 2013

more

May 1, 2013

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.

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

May 1, 2013

more

May 1, 2013

I've been a member of and donor to TMA for about 10 years. When I was diagnosed with PM my doctors called it a 'rare' disease, and offered no help other than massive amounts of medications. I contacted TMA and got support and factual information that helped not only me, but my family to understand and cope with my disease. I believe in their efforts to support patients and their families. I have been pleasantly surprised at how their Medical Advisory Board doctors take the time to talk to me as an individual (at the annual conferences). And I applaud that TMA has granted over $3 million to research myositis diseases.

More feedback...

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

April 30, 2013

more

April 30, 2013

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.

More feedback...

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

April 30, 2013

more

April 30, 2013

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!

More feedback...

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

Previous | 1 2 |
Write A Review

Filter by reviewer role:

Support This Nonprofit

Help this nonprofit get more reviews

5 tips for getting reviews

5 tips for getting reviews...

  1. Sending an email to clients, volunteers, donors, board members, and other partners with a link to your profile page.
  2. Putting a link on your Web site
  3. Including a link in your email newsletter
  4. Putting a link in the signature of your email
    Putting a link on your facebook page and status updates
  5. Tweeting out a link to your twitter followers

3 hours of volunteer time for this nonprofit will...

Volunteers could help with an awareness event, assist with mailings, or support a fundraising event. Volunteer