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Myositis Support And Understanding Association

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Nonprofit Overview

Causes: Health, Nerve, Muscle & Bone Diseases Research

Mission: Our mission is to improve the lives of and empower those fighting myositis through education, support, awareness, advocacy, and access to research. We are an all-volunteer, virtual patient-led 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, financial, and emotional support they deserve in dealing with a group of rare, debilitating autoimmune muscle diseases, the Idiopathic Inflammatory Myopathies (IIM). Living with a rare and chronic illness affects all aspects of life, including causing financial hardships for many patients. Our financial assistance program helps patients directly and since the launch of the program in 2016, we have awarded over $200,00 for medical bills, emergency household expenses, mobility and assistive devices, and medical travel. We continue to partner with other organizations, researchers, and the pharmaceutical industry to provide myositis patients access to research. In addition, we partner with companies outside of traditional research whose work impacts and may benefit myositis patients and caregivers. Some examples include Antidote for their clinical trial matching program, Plasma Services Group (PSG), which offers paid plasma and blood donation opportunities for patients for medical research, and Allstripes as a founding partner for the inclusion body myositis program. Education is a key component of our mission, and we give it away freely! We have a comprehensive myositis website as well as a new interactive platform for patients and caregivers to share their experiences living with myositis - MyositisLIFE.org. Since our start in mid-2015, we embraced technology, knowing it would provide the tools necessary to make the myositis community stronger, better educated and informed about the disease, and actively involved in managing one's own health and wellness. In addition, we organize and host live webinars, video support groups, and provide top-notch patient and caregiver support in the Myositis Support Community, in partnership with Inspire. We invite you to join us at MSU in making a real difference in the lives of myositis patients and caregivers. Visit Understandingmyositis.org.

Target demographics: Myositis Community

Direct beneficiaries per year: over 15K myositis patients and caregivers with support, education, and connection, awarded over $200,000 in financial assistance since 2016

Geographic areas served: United States

Programs: myositis patient financial assistance, myositis "Simply Put" education, rare disease patient advocacy, numerous patient and caregiver support options including 7 monthly Zoom support sessions, a new Club on Clubhouse, and 4 Facebook groups, and a community on Inspire. We also provide access to research and clinical trial matching, and empowering volunteer opportunities for anyone interested.

Community Stories

45 Stories from Volunteers, Donors & Supporters

2 mexpat

Client Served

Rating: 5

Myositis Support And Understanding was the first page I found when I was diagnosed with Polymyositis by a positive deep muscle biopsy. I had no one to turn to. Nobody here had heard of the disease. My doctor had actually never heard of the disease & therefore had nothing to offer to me. So I suffered in silence and ignorance, until bingo! There you were! My first “hit” on the internet! Sure, there were medical articles by NIH and others, but nothing directly for me, the patient. And so I turn, almost daily, to MSU for guidance and help. Through their unswerving dedication, one day, soon, this group of horrendous diseases will be as much of a household word as Alzheimer’s. You not only spread awareness to patients and the medical professionals, you are a font of compassion, empathy, and extremely valuable information that we are able to comprehend, and you give us hands-on ways to help us improve our lives. But maybe even more importantly of all, you give us HOPE. Thank you, MSU, for being there—for me and for thousands of others. ❤️

Comments ( 1 )

myositissupport Thank you for such kind words about our organization! We are so grateful you have found us and that you are a part of our family. Yes, HOPE, and not having to live with this alone. We are here for you!

1

Board Member

Rating: 5

MSU is the only charity that I know that provides financial assistance to individuals for medical needs, e.g walker, visiting an specialist. As a patient with Myositis I have found that MSU has changed my life for the better, I would be totally isolated without their support groups online and their zoom sessions.. What a difference they make!

Mary L.11

Client Served

Rating: 5

I was diagnosed wih Dermatositis, a form of the very rare autoimmune disease that this organization exists to give support and education for. As I read all of the high quality information about my diagnosis I could find, I stumbled into the Myositis Support and Understanding site. I found, very quickly, that this "stumble" was a very important one - one that would profoundly affect my life experience with this disease. MSU doesn't "just" supply a an abundance of disease information. It provides REAL PATIENT support that is always available and accessible in multiple forms - via an active online support group(s), multiple Zoom support sessions offered regularly throughout each month, a financial assistance program to assist with multiple disease related financial needs, and much more. It also offers the opportunity to volunteer to assist others. I truly never imagined that an online organization could become such a huge, ongoing support in my myositis journey. And I am so very grateful. MSU is a prototype for what a patient support organization can and should be!

1

Volunteer

Rating: 5

When I was newly diagnosed with Myositis, I turned to Myositis Support & Understanding for information about our rare disease, & find others like me who understands what I am experiencing. MSU is a great nonprofit that provides helpful resources & helps people live with this rare disease & it is comforting to know that MSU is there for us & that we are not alone in living with Myositis.

2

Volunteer

Rating: 5

When I was diagnosed in 2018 with Polymyositis I felt the world had ended. I had no idea what to expect or how I would be able to carve a life for myself and my family. I turned to the internet and found Myositis Support and Understanding (MSU). It saved my life. I found others who were exactly like me and understood what I was going through. I found their video support groups and got to talk to others who had been in my shoes and were thriving. MSU gave me hope, compassion and a purpose again. All of the volunteers are so compassionate and giving. To me it was and is a family.

2 Jason H.13

Volunteer

Rating: 5

MSU has been such a great help in my life since my diagnosis of Necrotizing Autoimmune Myopothy in 2016. I was so lost and alone and finding MSU has made me know that I am not alone in this and there is great support out there. Since then I have joined as a volunteer. I don't know mentally where I would be without MSU

1 Lynn W.2

Board Member

Rating: 5

When I was newly diagnosed with a rare autoimmune disease, Dermatomyositis, Myositis Support and Understanding helped me work though my fears about what the future held for me and provided compassionate and caring support that helped me realize I was not alone with my feelings. Come for the support and stay for the family.

Previous Stories
2

Board Member

Rating: 5

Since my diagnosis in 2015 with Dermatomyositis, Myositis Support and Understanding (MSU) has become a second family to me, providing the support and camaraderie to help me adapt to my new life with a chronic illness. Volunteering seemed like the natural way to support the mission of the organization. It has given me a great sense of satisfaction to watch this organization grow and thrive and make a difference for the myositis community.

2

Client Served

Rating: 5

As a caregiver for my husband living with dermatomyositis, the challenges are many. But, I have seen how MSU has helped him grow and the website has helped me to better understand what he goes through, including chronic severe pain. I often feel helpless, but when I see the work he does, and the many he helps through MSU, it makes me so very proud of him. Keep up the great work MSU!

3 jerryWilliamsmsu

Board Member

Rating: 5

I founded this organization based on needs in the community, including financial assistance and patient and caregiver support that is encouraging, positive, and loving, and now available on platforms like Zoom, Clubhouse, Facebook, and Inspire. We are a family and this organization and its members have truly saved my life.

As an all-volunteer organization, we keep overhead low so that more of your donation goes directly to patients and patient-centered programs. We are continuing to grow and I am grateful for all of our volunteers and for the work they do each day to ensure we are continuing to improve the lives of those impacted by myositis, a group of rare diseases.

Previous Stories
8

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.

2 Llama L.

Client Served

Rating: 5

MSU has been an incomparable resource. From initial diagnosis to the everyday struggles of living with Myositis, MSU has been there for me. Truly a priceless gem that I am thankful for everyday.

2

Client Served

Rating: 5

I was diagnosed with dermatomyositis in 2018 and recently joined this group. I sure wish I had joined earlier because the benefit of listening to and speaking with other people who also have a rare disease is immeasurable. In addition to emotional support, the group offers the benefit of it's years of experience and learned expertise in dealing with all aspects of having a rare disease. The group leaders are dedicated and unwavering in their support. I couldn't ask for more.

2

Client Served

Rating: 5

When I found MSU I found a family that it si always there! Even if I'm thousand of miles distant, an ocean between us, I consider all of the memeber my family. They understand me, and always have a good word .
People behind MSU are amazing!
Love you guys!
Roberto

Previous Stories
3

General Member of the Public

Rating: 5

As an Italian man who doesn't know other people with my disease in my country, it was a bless finding MSU!
Roberto

2 Crimco

Volunteer

Rating: 5

I was diagnosed with Dermatomyositis in 2012. I was unable to walk, stand and could not breathe without oxygen. I was isolated, lonely and knew of no other person with myositis to talk with. I was also forced to take leave from work.

About one year or so later, I stumbled upon the Myositis Support and Understanding Association online. It opened doors and immediately connected me with people that also had myositis. We could share stories and speak directly to others with our disease. This association was an emotional lifesaver for me and many others. One hears that sentiment echoed over and over during live Zoom sessions.

Many years later, MSU continues to grow and advocate for patients. Informative video sessions are held with doctors who have expertise in the myositis field, physical therapists, Myositis doctors answering questions regarding Covid and autoimmune compromised individuals, to name a few. Regular Zoom sessions are held throughout each week and pop-up sessions for anyone needing to talk or feeling alone. There is always someone across the globe to speak with when you have the need. Additionally, financial assistance is now given to those who need monetary help due to myositis.

I have volunteered with many non-profits over the decades, however, Myositis Support and Understanding is by far the one with the most involved, active all-volunteer staff. There are no bricks and mortar - everyone is virtual!

2 Shannon A.3

Client Served

Rating: 5

Having a rare disease, dermatomyositis, it’s very important to me to connect with others going through same thing. I can always count on this group to provide support during good times and times that I struggle

Previous Stories
4

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

Client Served

Rating: 5

I have IBM, a degenerative muscle disease. The Myositis Support and Understanding organization provides outstanding service. Through MSU, I am able to connect with others who have IBM, and share stories as well as learn about new assistive devices, clinical trials and breakthroughs in research. MSU also supports research and many online workshops for its members. I don't know how I would get through this journey with IBM without MSU.

1

Client Served

Rating: 5

MSU has been such a blessing in my life as a patient. When your body suddenly fails you, and you're told you have something quite rare, you feel so alone. MSU has given me a family of people who know exactly what I'm going through, and we're able to help each other.

2

Volunteer

Rating: 5

Having a rare disease means you are a chosen one, and not in a good way. And you feel so alone, because no one has ever heard of your rare, often invisible, definitely non-pronounceable disease. No on. Only by some miracle of google search, you find your tribe, the Myositis Support and Understanding Association. And you "meet" through the miracle of Facebook many others who share your rare disease, and know how to say it!! And, MSU provides a wealth of information and documentation and resources designed to help me live my life with myositis in the best way possible. And the helpful, generous of spirit people in this community collectively offer tips, advice, and we are patient focused. I can not stress that enough. It is so refreshing to find people who want to help me have some quality even though I'm living with a disease that ravages my body. If you or a loved one becomes a chosen one to have any type of Myositis enter your life, your welcoming tribe awaits at MSU. Check them out. You will be glad you did.

2 Craig W.2

Client Served

Rating: 5

I suffer with Inclusion Body Myositis, a muscle disease the prevents me from cleaning myself after using the toilet.
MSU enabled me to purchase a Swash 1400 Bidet. I was able to keep my independence. Thank you MSU!

2

General Member of the Public

Rating: 5

MSU has been indispensable for me and my family. I was recently diagnosed with polymyositis and was scared and felt very isolated. I needed to know more about my illness and what I could do to help myself and my family understand it. and what we could do to help me through it. I immediately went online in search of answers. By the grace of God I found MSU. Through them I received so much education concerning this illness and types of treatments I could anticipate. I now feel better informed to advocate for myself concerning this disease. I understand my symptoms and what I need to do to support myself in getting better. I go to the MSU website almost every day researching science backed info. I join sessions online whenever possible. I cannot even begin to imagine trying to handle all the various aspects of this rare disease without the support of MSU. They have been a lifeline for me and my family.

2

Client Served

Rating: 5

When I was 1st diagnosed with Myositis I was completely lost. I didn’t know anyone in my area with this disease. I didn’t know how to explain my condition to my children who saw mommy looking the same but complained of pain, extreme fatigue and weakness. MSU saved my life. They not only restored joy, helped me to know I wasn’t alone but they also provide more information to about my condition than the doctors I had at that time. I am forever grateful for MSU. They will always hold a special place in my heart.

2

Volunteer

Rating: 5

I was diagnosed with Dermatomyositis in June 2015 after two weeks of intense diagnostics while becoming sicker and sicker and weaker and weaker. I had never even heard of this rare disease. Skimming through Facebook I stumbled on MSU’s page. It was a welcome treasure trove of information. They also sponsor regular video support meetings which allow us to meet with and chat with other patients. They sponsor on line seminars led by leading researchers in Myositis and Rheumatology and keep us up to date regarding clinical trials for new drugs and treatments. I have not required but they also provide financial assistance both information and actual financial aid for patients finding themselves in a temporary cash bind. Jerry Williams the Founder and President is also a patient and participated in leading most of these activities himself. My understanding is that no one at MSU is paid so all funds are directed to assisting and supporting members and participants.

Previous Stories
3

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.

3

Client Served

Rating: 5

MSU has always been on the forefront of supporting patients regarding the rare disease they have. There aren’t very many of us as the diagnosis is rare, but the ones who are there are searching for answers, hope and freedom. MSU helps guide patients and their families through the treacherous roads that accompany the disease of myositis. From learning opportunities, financial scholarships and group discussion meetings, MSU has filled a void in my life as a patient with myositis. Thank you Jerry and all the volunteers who make MSU a success, helping others!

1

Client Served

Rating: 5

5 stars are noth enough to rate this wonderful group, why? Because as patient of a rare disease is not easy to find information to help you to understand and deal with it, but here, we, the patients, have a lot of resources to keep fighting but overall we find respect, empathy and compassion. Thanks so much to MSU and specially to Jerry and Emily for their dedication.I was diagnosed with systemic Amyopatic Dermatomyositis.

1 Belinda M.2

Client Served

Rating: 5

When I was in the “need to know” after diagnosis with Polymyositis in late 2015, I found MSU! A wealth of information, a welcoming group, friends, my people. Losing my job of twenty yrs, not understanding what was going on with my body, the loss of health insurance, the doctors appts & the testing took its toll. Mentally, physically and emotionally, not to mention financially. MSU was there. When things got really out of whack...MSU helped me financially with some medical bills. It took so much pressure off my husband & myself at that time and allowed us to catch our breaths. I can’t thank the group & MSU enough for helping me to understand this disease. We’re not “chronically ill...we’re medically fascinating”.

1

Client Served

Rating: 5

I love MSU. I’ve gotten so much support from zoom meetings. It’s the only place that I find understanding people. It’s so wonderful to talk to others about our rare diseases. The admins are the best.

2 Jennifer B.29

General Member of the Public

Rating: 5

This group is an excellent source of information and motivation, emotional and moral support. It is well managed. With these diseases being so rare, it is hard to find this kind of support in one's community and consequently, one can feel very alone and misunderstood. This site helps reverse all that.

1 Tracy C.5

General Member of the Public

Rating: 5

These guys help Myositis patients all around the world and are a great support to us all!

Previous Stories
3

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

2 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.

2 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.

4 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.

4 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!

3

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.

4 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.

Comments ( 1 )

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myositissupport 02/22/2020

Join us in honoring Rare Disease Day 2020! Check out our upcoming live online video education sessions, and if you are interested in empowering at-home volunteer opportunities, submit your interest to be entered for a chance to win a $500 Visa gift card, sponsored by Plasma Services Group (PSG). See full details for this and all of our Rare Disease Day/Week events at Understandingmyositis.org/rare

3 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

3

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.

3 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

3 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!

3 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!!

5 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.