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Pilyog

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5 reviews

Review for The Myositis Association, Alexandria, VA, USA

Rating: 5 stars  

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,

Role:  Board Member
 

Review for The Myositis Association, Alexandria, VA, USA

Rating: 5 stars  

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.

Role:  Client Served
 

Review for The Myositis Association, Alexandria, VA, USA

Rating: 5 stars  

I initially found TMA as a way to get information and support as a patient struggling with myositis. I was so taken with the organization I offered to be on the Board of Directors where I proudly continue to serve. This has been a lifesaver for so many affected with myositis. It's been astounding how much is achieved by this group.

Role:  Board Member
 

Review for The Myositis Association, Alexandria, VA, USA

Rating: 5 stars  

I learned about The Myositis Association after being diagnosed with dermatomyositis. Like many of us with this debilitating disease, I had never met anyone with similar problems. Worse, it was hard to find doctors and other healthcare providers familiar with the disease. TMA has been an invaluable resource for myself, my doctors, trainers and therapists. After my first annual conference, I was so impressed with the camaraderie, level of professionalism and dedication of the staff and the world-class medical advisory board, that I offered to and was honored to become a board member. In the few years I have had the privilege of serving, I have seen numerous additions to programs and services, donations, educational materials and more, all to serve the patients, their caregivers and healthcare providers. A wonderful organization.

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?

2014

Role:  Board Member
 

Review for The Myositis Association, Alexandria, VA, USA

Rating: 5 stars  

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.

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

Role:  Client Served