Lincoln, DE (April 3, 2018) – Myositis Support and Understanding Association (MSU), a patient-centered 501(c)(3) nonprofit organization, is proud to announce a partnership with Antidote Technologies, a digital he
A bright future for 2018
It has been a busy and productive year for MSU. We are sorry so many are still suffering from this rare disease, but there is hope as we are making great strides in helping to improve the
LINCOLN, DE, UNITED STATES, November 21, 2017 — Myositis Support and Understanding (MSU) is once again a participant in #GivingTuesday, a global day of giving. Since its inception in 2012, #GivingTuesday has b
Myositis Awareness Month got me thinking…and really, reflecting about a time, before my initial flare-up almost three years ago, when Myositis wasn’t at the forefront of my consciousness—a notion that seems so fo
I cried when I read your article. I too was diagnosed 3 years ago (with polymyositis), mine came from a neurosurgeon giving me the results of my muscle biopsy. I thought the appointment was just to check the wound, so I told my husband to go to Jury duty that day instead of being by my side as he had through the previous 6 months of tests.
You see the original diagnosis I had been given was ALS/Lou Gehrig’s, so instead of being upset, I was thrilled to hear it was only “Poly”. I knew that was a cakewalk comparatively and I was grateful. As a result I have been in “denial” about how debilitating this condition is (and in my case, getting progressively worse). Your piece gave me the courage to accept the severity of this rare disease and the inspiration to work harder at finding the resources I need to cope with it both physically and emotionally. Thank you for so adroitly articulating your feelings but most of all for your honesty.
LINCOLN, DE, UNITED STATES, August 1, 2017 — MSU is a 501(c)(3) non-profit organization founded on July 30, 2015, for patients living with, and for loved ones caring for someone with, Myositis, a rare and
Leaves were starting to fall, the air was crisp, and the evenings started to feel much cooler. As each day went by, I noticed that I struggled more and more to get out of bed. I was starting to feel weak and I
It’s here, the 1st day of Myositis Awareness Month! Our Month! A month to ensure we take the time to reach out to others and help to educate them about our rare and complicated disease, inform them on how it affects our lives in many different ways (spots of the zebra), and to raise money to ensure patients have an organization that is dedicated…[Read more]
May is Myositis Awareness Month. Myositis Support and Understanding commemorates the month with patient-centered events.
Our theme, “With Myositis, Sometimes Zebras Have Spots” refers to the multitude of ways
MYOSITIS AWARENESS T-SHIRTS AND HOODIES! 7 DAYS LEFT TO ORDER!
Why a spotted Zebra, you may ask. The Zebra is the recognized symbol for rare diseases. When you think of a zebra, however, you typically think of stripes. But with Myositis, represented by a blue striped zebra, our symptoms are anything but typical. Sometimes we feel quite alone and…[Read more]