Over 1.8 million nonprofits and charities for donors, volunteers and funders

2019 Top-Rated Nonprofit

Myositis Support And Understanding Association

217 pageviews

Add to Favorites

Share this Nonprofit

Donate

Volunteering Oportunities

Nonprofit Overview

Causes: Health, Nerve, Muscle & Bone Diseases Research

Mission: Our mission is to improve the lives and empower those fighting Myositis through education, support, awareness, advocacy, and access to research. We are a patient-centered organization that provides: Independent, interactive online platforms that educate and connect patients, caregivers and family members with each other and with healthcare professionals. Educational resources for patients, families and the healthcare community. Need-based financial support for medical-related expenses. Information-based advocacy with all levels of policy-makers, insurance companies and other medical services and their decision-makers. Innovations in research and treatments through clinical trial matching and by contributing a portion of our donations when possible.

Results: We have continued to build a strong network of myositis patients and caregivers, providing them the educational support they deserve in dealing with a rare group of autoimmune muscle diseases, the Idiopathic Inflammatory Myopathies. Rare and chronic illness causes financial hardships for many patients and why our financial assistance program is so important. Since the launch of the program in 2016, we have awarded over $68,000 for medical bills, household expenses, and medical travel. We are continuing to partner with other organizations, researchers, and the pharmaceutical industry to provide access to research for myositis patients. In addition, we have partnered with a tech company, Antidote, to offer a clinical trial matching program. Education is a large part of helping any rare disease community. We host a comprehensive myositis website as well as a new platform for patients and caregivers to share their experiences living with myositis - MyositisLIFE.org.

Target demographics: Myositis Community

Direct beneficiaries per year: over 8,000 myositis patients and caregivers with support, awarded over $45,000 in financial assistance

Geographic areas served: United States

Programs: myositis education, rare disease advocacy, various myositis patient and caregiver support options, myositis patient financial assistance, providing access to research and clinical trial matching.

Community Stories

16 Stories from Volunteers, Donors & Supporters

2 Emily E.2

Client Served

Rating: 5

MSU has been such a life changing organization for me. I have found a wealth of knowledge and information that pertains to me in a world that does not have an abundance of resources in this area. I have also been able to network with truly wonderful people. I hope many more will take advantage of connecting with MSU!

1 Tracy C.5

Client Served

Rating: 5

Such great support from this group. I have learnt more about my disease from them, than from my own doctors. Doesn’t matter what part of the world we are in, there is always someone around to get in touch with. Their video chat sessions are fantastic and keep us in touch with others in similar circumstances

1 Keecha K.

Client Served

Rating: 5

Myositis Support and Understanding has been so beneficial to me personally. We have information available to us, as well as support from other members when questions pop up.

In addition they have free monthly meetings on line video chats. We can all see each other and talk freely about our conditions, and get suggestions from others suffering from Myositis.

They offer Grant's for those in need, and they have just started a memorial fund in memory of a dear member and a big contributor to our community.

1 Emily A. F.

Advisor

Rating: 5

I’ve had dermatomyositis for over 24 years. It took me 8 years to be diagnosed from the acute onset. It took me another 8 years to learn about any kind of support community for people who had the same disease. I found that in two FB groups. One of those groups was headed by Jerry Williams (later to become MSU). As I was in the process of publishing a book about living with DM I contacted him to see if I could be of service, because I knew how isolating the process of diagnosis and living with a rare disease was. We quickly found that our desires: to help others to not feel alone with this dreadful disease and to educate and support others - were aligned. He asked me to help him and Sandy with the support groups, and later to help start the non-profit. It has been one of the greatest pleasures and honors of my life to see this group blossom into a wonderful resource for a previously underserved population. I am so proud of all that this organization has accomplished. As a patient, I still go to the groups for support and my own health questions, as well as to share new adaptive advice I’ve gleaned along the way. There is strength in numbers and experience. I can tell you that this organization continues to help all of us, even those who volunteer.

3 Mindy A. B.

Client Served

Rating: 5

I have dermatomyositis and its a challenge daily to keep healthy with the constant fear of catching a cold or getting cancer this is a place where i get alot of information.

2 Erin H.1

Client Served

Rating: 5

MSU provides straight-to-the-point, research-backed education and support for patients and family members affected by inflammatory myopathies. What sets MSU truly apart, however, is its tapping into technology to connect patients with face-to-face video support streams!

On a personal note, this group helped connect me with fellow patients in my area. With rare diseases, you rarely meet another patient face to face, and this made it possible!

2

Volunteer

Rating: 5

This organization is far more than a support group. It has provided me invaluable technical and medical information from reputable, really the top sources in a field that is severely under researched. There are live webinars that cover many aspects of living with Myositis, drugs and treatments, physical therapy and living in a world that literally doesn't see our invisible disease most of the time. Jerry Williams is an incredible human being and a Polymyositis patient for many years, as the principal Founder, he still makes daily contributions and is continually improving the Facebook pages, The Inspire Site, and the MSU Homepage understandingmyositis.org to enrich the user experience and provide more and more support for patients. Most remarkable is that none of the staff and support workers are paid, which if you look at the web site you would never believe! I am thrilled to be a member (its been nearly four years now), and it's definitely a nonprofit worthy of your support. By the way, the picture is me in February 2016, when I was very debilitated, unable to walk, or swallow, and strapped into the wheelchair (to give you an idea of the condition of some of our members), after many months of treatment and therapy I am much better today, though I still suffer from the disease.

2

Client Served

Rating: 5

Thank you, for helping myself and others to understand and gain knowledge in our disease.
I’m so very grateful that you care to help find resources and information in my Myositis disease.

2 Sarah S.15

Client Served

Rating: 5

This organization has been one of the best support systems that my family could have asked for in a very stressful time when NOBODY seems to have answers. From myself as the patient, to my husband as a caregiver and even my kids...we are all grateful for the SUPPORT and UNDERSTANDING we have received.

2 Todd S.2

Client Served

Rating: 5

Since I was diagnosed with polymyositis in 2017 . This organization has helped me tremendously. Information, how to videos, speaking with other members. Can't say enough good things

2

Volunteer

Rating: 5

It all started when i was hiking up a trail and my legs turned to rubber in cement I knew something was really wrong. I went though many doctors and even more testing In September 2017, after a muscle biopsy I found out I had myositis, then a short time later they officially diagnosed me with Necrotizing Autoimmune Myopathy (NAM), . Still doctors had no idea what I had or what to do. Going from doctor to doctor looking for answers I googled Myositis Support and was blessed with people who were knowledgeable, friendly and they educated me on the disease. I’m thankful for this support and friends I have made. We have one thing we all relate to a rare disease call myositis.

2 Shannon A.3

Client Served

Rating: 5

This organization provides a vast amount of support/information and has given me a network of many people suffering with same condition as myself, which being a rare condition is a very “rare” thing to find.

2 Kyle M.2

Client Served

Rating: 5

Hello Greatnonprofits!,
I battled for a decade for a polymyositis diagnosis. No one would believe me. I was anti-JO1 positive with MRI findings but everything else was non contributive, "just" muscle pain, clumsiness and overwhelming fatigue. Without MSU to teach me about what JO1 meant, what to ask for, how to deal with doctors I can safely say I would not have made it.

Thanks MSU! Keep it up!
Best regards
Kyle

2 Kate B.7

General Member of the Public

Rating: 5

Myositis Support and Understanding has been so helpful to me providing for travel assistance to another state for medical care, educational support and peer support. Thank you!!

4 Linda R.6

Client Served

Rating: 5

It’s hard to find words to express the gratitude I feel towards Myositis Support and Understanding. Having board members and the President being Myositis patients themselves (and ALL volunteers!) gives them such a unique way to really help our community, they KNOW what their members are going through. Thanks to MSU I have been able to find so many useful resources, stay on top of current and future Myositis disease and treatment research, and find personal support through their Facebook private support groups as well as the websites maintained by MSU. I was also assisted financially early into this disease process, when bills were piling up and I was in the hospital, MSU was able to assist me with getting some crucial bills taken care of. I’ve also had the honor of becoming a volunteer and assisting with some aspects of Facebook groups which is something that has helped me regain some sense of self value by being able to give back.

5 jerryWilliamsmsu

Board Member

Rating: 5

Myositis Support and Understanding Association has helped empower me to be not only an advocate for my health but to help anyone I can also self-advocate. It gives me hope that nonprofits still care about their constituents and will work endlessly to find solutions to challenges. MSU reaches out to other organizations (non-profit and for-profit), medical and research communities, and well-respected and knowledgable individuals to get answers needed.