Myositis Support and Understanding: A historical view
See our humble beginning, what we have done, and where we are now!
The dream of MSU began!
After living with polymyositis for several years, Jerry Williams decided to start his own closed Facebook support group, Polymyowhat: Understanding Myositis.
This was when Jerry began his dream to start a nonprofit to help patients.
Group dynamic, a family in the works
Name was a deterrent
The name change required a new group due to the number of members and the new group officially launched on 2/1/14.
Added Admins to help
We expanded beyond just a group
First ever closed Facebook group for IBM patients and caregivers
Under the direction of Sandy Morgan Block, we launched the first ever closed Facebook support group for Inclusion Body Myositis patients and their direct caregivers as IBM patients have different questions and needs.
Launched our initial website on Myositis Awareness Day 2014
This allowed us to save a ton of money that would later be used to file for nonprofit status.
We began to operate as an organization
We began selling Myositis wristbands and pens on our website in order to raise the funds needed. We are thankful to our group members for stepping up to help us raise those funds.
Our ``home`` group exceeds 1000 members
Our first official conference
We officially became incorporated
The founding directors include: Jerry Williams, President, Sandy Morgan Block, Vice-President, and Emily Filmore, Secretary. (The officer positions have since changed)
Adopted the Bylaws of MSU
Filed for 501(c) nonprofit status
MSU becomes a NONPROFIT ORGANIZATION
We received our official notification from the IRS that we were approved as a 501(c)(3) nonprofit organization on July 30, 2015!
Restructured our support groups
MSU attends and exhibits at TMA Conference
Myositis Awareness Month
Amended Mission and Vision
First ever Myositis Video Chat Support program
We hold monthly video chat sessions including disease-specific, Laughter Yoga, and hosting special guests.
MSU creates brochures for education/awareness
Website redesign and expansion
The site you are on right now is the new version that also includes the MSU Myositis Network, a social network just for Myositis!
Medical Advisory Committee formed
Medical Advisory Committee formed
Vicky has a strong passion for work with Myositis and especially MSU.
“Being a Registered Nurse for over 29 years and a certified IgCN, I believe I am in an excellent position to help the members of Myositis Support and Understanding in a number of ways.”
Myositis Awareness Month 2016
We launched a #MyositisLIFE campaign where we asked members, patients, caregivers, family members, and friends to share what their #MyositisLIFE looks like through stories, photos, videos, original artwork, and songs. This was a huge success.
Through our entire campaign, we reached over 187K people! Extraordinary! We also exceeded our fundraising goal with thanks to our members and their families and friends.
Myositis Patient Financial Assistance Program
Due to the rarity of the disease myositis, and the fact that many doctors may only see one patient during their career, if any, patients with Myositis, and suspected of having Myositis, often face difficulties in procuring an expedient diagnosis and adequate treatment.
Furthermore, patients with chronic illnesses often face financial difficulties due to ongoing medical bills, lost wages, and extraneous expenses indirectly related to healthcare, such as home modifications and assistive devices.
Therefore, we have worked tirelessly to raise funds to establish the MSU Financial Assistance Program. Through this program, we will provide funds to patients for travel to see known myositis experts for testing, diagnosis and treatment, help with medical expenses, and household expenses due to the overwhelming costs of living with a chronic illness.
Dr. Tae Chung joins MSU's Medical Advisory Committee
Dr. Chung earned his M.D. from the Catholic University of Korea. He completed his residency at Johns Hopkins and performed a fellowship in neuromuscular medicine at Johns Hopkins.
Dr. Tae Hwan Chung is an assistant professor of Physical Medicine and Rehabilitation and Neurology at the Johns Hopkins University School of Medicine. His areas of clinical expertise include neuromuscular disorders and physical medicine and rehabilitation.
MSU exhibits at TMA Conference
We also met vendors that provide products to help myositis patients with everyday living such as toileting and getting up from a seated position.
MSU's Social Networks expand and really take off!
Using this approach takes a lot of time but the rewards are worth it. We have made many new friends using this social approach and plan to work even harder to reach those who need us.
MSU and Idera Pharm collaborate
Rare Disease Day
2017 Theme: Research brings hope to people living with a rare disease
Rare Disease Day Video Chat with Idera Pharm
MSU Announces Theme for Awareness Month 2017
We are excited to announce that our theme for May 2017, Myositis Awareness Month is “With Myositis, sometimes Zebras have spots.” We have created t-shirts and hoodies that are on sale through April 12th so they can be delivered around the first day of May.
Zebras represent Rare Diseases and the “spots” represent all of the way myositis affects patients and caregivers in unique ways despite having the exact same disease. We will be releasing a ‘spots’ sheet with talking points that will help you to enter into conversations that this theme, and the shirts, will likely create.
More Myositis awareness activities will be released as May approaches. In 2016, we reached over 187,000 people, a truly amazing number. Let’s double that this year!
Join our email updates and newsletter
Subscribe to our general myositis-related email updates. If you are a member of MSU, you will automatically recieve these updates and there is no need to subscribe here. To register for your free MSU membership and access to The Myositis Community Network, visit UnderstandingMyositis.org/register