Myositis Support and Understanding: A historical view

See our humble beginning, what we have done, and where we are now!


Group dynamic, a family in the works

Jerry’s goal for the group was to create a family dynamic where building relationships was key to support.  This family dynamic has remained throughout the life of MSU.

Name was a deterrent

Jerry added Kate Rossi Stuart as the first admin of the group. Together they realized that the name “Polymyowhat” was a deterrent to those with other forms of Myositis. So, it was decided that a name change to Myositis Support and Understanding was due.

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

The group began to grow and quickly. Jerry decided to add admins to the group and develop some goals of what the group would do, as a whole.

We expanded beyond just a group

Sandy Morgan Block was added to our group as an Admin and this is when things really began to take off for us. We began to expand under the name of Myositis Support and Understanding to include a Facebook page as well as other social networking sites.
June 9, 2014
September 21, 2014

We began to operate as an organization

Even though MSU was still not official, Sandy and Jerry decided to operate it as if it were to provide us with the experience needed when we were ready, and had funds available, to apply for nonprofit status.

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

After only a short time, our home group hit 1,100 members!  The group continued to grow quickly from this point and required us to add more administrators.

Our first official conference

Jerry Williams and Sandy Block attended and had an exhibit table at the U.S. Pain Foundation conference in Washington, DC. This was our first exposure as MSU.
May 13, 2015
May 13, 2015
July 15, 2015

Adopted the Bylaws of MSU

After a lot of hard work and consideration, we officially adopted the Bylaws that dictate how MSU will operate.
July 25, 2015

Filed for 501(c) nonprofit status

After fundraising within our support groups to raise the money required, we officially filed for our 501(c)3 nonprofit status!
July 30, 2015
August 2015

Restructured our support groups

With MSU as a bonafide nonprofit we promoted Maureen Crowley as the Sr. Group Advisor to manage the support groups so that they had a consistent leader.
September 2015
October 2015

Myositis Awareness Month

TMA and MSU worked together and decided to make May Myositis Awareness Month. MSU still celebrates Myositis Awareness Day, that is official, on September 21st of each year.
November 2015

Amended Mission and Vision

Realizing that Myositis patients need a loud voice, we amended our mission and vision to include Advocacy at all levels of public policy.
February 29, 2016
March 2016

MSU creates brochures for education/awareness

Aside from our information cards, MSU now has a fully, well-designed brochure to provide to patients, physicians, healthcare providers, family members, and the general public.

Purchase Myositis Gear

April 2016
May 2016

Medical Advisory Committee formed

In May 2016, we formally launched our medical advisory committee

Medical Advisory Committee formed

Vicky Starr, RN, IgCN becomes the first member of the MSU Medical Advisory Committee.

Vicky Starr, Medical Advisor for MSUVicky 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.”

July 14, 2016
July 22, 2016

Dr. Tae Chung joins MSU's Medical Advisory Committee

Dr. Tae Chung, MSU medical advisorIn July 2016, Dr. Tae Chung, a neuromuscular specialist from the Johns Hopkins Myositis Center, joined our 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.

September 2016
December 2016
January 2017
February 2017

Rare Disease Day

For the fourth year in a row, Myositis Support and Understanding Association, Inc. (MSU) is proud to join NORD as a participant in Rare Disease Day (RDD), a day to help make the voices of patients of rare diseases heard because we can feel our needs silenced by the rarity of our diseases. MSU works every day to give patients with myositis a voice.

2017 Theme: Research brings hope to people living with a rare disease

Rare Disease Day Video Chat with Idera Pharm

As part of Rare Disease Day 2017 and our collaboration with Idera Pharm, we invited Dr. Joanna Horabin to join us for a video chat session to learn more about the currently recruiting, Pioneer clinical trial for adults with dermatomyositis, IMO-8400. To help others learn more about this amazing trial, we recorded it so you can find more information. This trial is active in 17 U.S. locations and 5 outside of the U.S. Idera has made it very easy to be a part of this trial with benefits rarely seen in clinical trials today.

See the video here

April 2017
May 2017

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