My Nonprofit Reviews

I have written 3 other reviews of MSU, one under my name here, "Mary L." and two as a nameless volunteer. Those were loooooong and this will be much shorter. As I have written before, MSU is a prototype for what a nonprofit that serves patients with a rare disease (types of idiopathic inflammatory myositis) SHOULD BE. I have been a volunteer for MSU for 3 years and interact with myositis patients in our online forums, as well as in our online groups on Zoom and Clubhouse. I found MSU very quickly after I was diagnosed with dermatomyositis, May 9th of 2021. And I am soooooo thankful that I did! I continue to be so wow'd by the services MSU provides, and particularly our Financial Assistance program, which is very rare, particularly in the "rare disease space." MSU becomes a family for many of us - and those aren't just words. If you have any type of myositis, or are a care partner to someone who does, come join us and find the amazingly supportive family that we are as well as all of the support resources that we offer!

I am now in my 3rd year of volunteering with Myositis Support and Understanding. And I am STILL utterly amazed at how HUGELY patient centered and focused this 100% volunteer run organization is. Sometimes, it is hard to believe it's real, but oh, it is very, very real. What MSU offers in real patient centered education and support still WOWS me!

MSU provides an outstanding website of patient resources and educational info AND has one of the VERY few Patient Financial Assistance programs in the RARE space .It isn't just a list of resources and other places you can go and check out for money that may be available for very specific needs. It is a program (again, administered by volunteers) that myositis patients can apply to for many types of financial needs.This is HIGHLY EXCEPTIONAL!

MSU has a listing of all kinds of support groups happening weekly - often, with multiple groups per week. NO week passes without at least 2 support groups - EVER!

I could go on and on, but I also wrote about my experiences with MSU in 2021 and 2022. And everything I wrote then, continues to apply now. I doubt that there is any other non-profit serving patients that could even begin to match MSU and all it does and gives to PATIENTS with myositis and their care partners. As a woman newly diagnosed with dermatomyositis, the day I stumbled upon MSU, was a life-changing day. And continues to be so! I volunteer to try and give back just a bit of all I have received and continue to receive. Thank you from my heart, always, MSU!

As I wrote in my review last year, MSU is a prototype for what a patient support organization can and should be. I was graced with finding MSU less than 2 months after my Dermatomyositis diagnosis in early May, 2021. And it is not an exaggeration to say that finding MSU was LIFE-CHANGING, I have now been a very active participant in MSU online, video and Clubhouse support groups for 13 months. I have seen a number of members struggling with medical mobility needs and other medical needs who MSU was there for through their financial assistance program. My own Myositis knowledge base has been deepened and widened through science based information/articles and videos on the MSU website and special webinar presentations by Myositis experts. My base of support has expanded through the many co-member friends I have made who ‘GET” Myositis and my frustrations and experiences on this journey. I truly cannot imagine a more supportive or responsive patient support organization which is run 100% by volunteers. My life with Dermatomyositis has been profoundly changed, in wonderful, physical and mental health supportive ways by finding and being an active MSU member!

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!