Myositis Support and Understanding is just getting started

We are just getting started . . .

I want to write quickly to wish you and your family a Happy Thanksgiving and to tell you how thankful I am for YOU.

My name is Jerry Williams and I am the founder and president of MSU.  Almost 17 years ago, I started my very own personal journey with myositis and I wish an organization like MSU was around when I was fighting for a diagnosis. I felt totally alone, completely confused, and very afraid.

I fought for over 3 years to get a diagnosis. I was transported from doctor-to-doctor and hospital-to-hospital only to be told the same thing over and over, “we don’t know what is wrong with you.” It was frustrating, and it felt like a repeated defeat. I never lost hope and neither should you.

You see, in the days when I was fighting for a diagnosis, education and support were sparse. Technology was not what it is today. But even then, I knew we could do better.

MSU is more than just support groups. MSU is a patient-centered nonprofit organization.

In 2010, when I was strong enough to sit at a computer for more than a couple of minutes at a time, I created a myositis support group on Facebook, realizing that while these diseases are rare, I was not alone. I knew patients and caregivers wanted to find one another to learn more about their disease and to hear how others cope with the devastation these diseases often bring. I knew many were searching for hope, empowerment, and creative ways to live their best MyositisLIFE.  We were not getting what we truly needed and this first support group proved that patients and caregivers wanted more.

It was also in this very first group that I began to build long-lasting and meaningful friendships with other myositis patients and caregivers and where I found I was not alone. This was an “AHA” moment and it changed my life. I knew I had to find ways to share it with others and to help provide ways for patients and caregivers to connect in order to share their experiences, education, and to provide informational and emotional support.

We have come a long way since that first Facebook support group in 2010. That group was an essential part of who we are today and where I met the others who would helpcharge the way in creating a true patient-centered organization, one founded by myositis patients, for myositis patients and caregivers. I am thankful for the co-founding directors, Emily Filmore and Sandy Morgan Block.

A few years later, in mid-2015, Myositis Support and Understanding Association officially received its 501(c)(3) nonprofit status and with that, new support groups and programs were launched, education became abundant, and we launched our need-based financial assistance program that has helped provide over $40K in patient support in the past 2.5 years.

MSU is just getting started. You see, as long as there are still people dying from the various myositis diseases, we will be here to ensure patients and caregivers have a place to share experiences and knowledge and to get the education they deserve to effectively self-advocate and have informed conversations with their healthcare providers. We will be here to provide patients in need with financial assistance that will help them travel to see myositis specialists, help cover emergency household expenses, and mounting medical bills. We will be here to work together with academia and pharmaceutical companies to ensure we continue to try and find therapies for Inclusion Body Myositis, of which none currently exist, and find effective and less harsh treatment options for polymyositis, dermatomyositis, and necrotizing autoimmune myopathy. Most of all, we will be here to continue to Empower the Myositis Community.

What I am trying to say, and not so eloquently, is that I am thankful that you have joined us on this journey. I appreciate your ongoing support and hope you enjoy a day of thanks with your family members and friends.

Together we will continue to do great things for the myositis community and we thank you for being a part of that.

In Health and Prosperity,

Jerry Williams
Founder and President
Myositis Support and Understanding Association
Understandingmyositis.org

“Empowering the Myositis Community”

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Jerry Williams, the Founder and President of MSU, was diagnosed with Polymyositis in 2003 at the age of 27. Since his diagnosis, Jerry has made it his mission to help others living with the rare disease, Myositis. To this effort, Jerry is involved in many different aspects such as education, writing, helping support and answer questions from patients and caregivers, social networking and website development, and much more. (NOTE: Some things are posted under Jerry Williams but he is not the true author. This is because he manages the website.)

View more information: Jerry Williams

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