What members, supporters, and others say about us

Testimonials about MSU and the work we are doing

Here at MSU, we always want to hear your feedback. We try to keep everyone involved updated on our latest programs, projects, services, campaigns, events, and anything else that is important to myositis patients and care partners. We are honored to have so many wonderful people within our organization and membership and we thank you for telling us your experience with MSU.

I want to say a huge THANK YOU for the help through the MSU Myositis Financial Assistance program. This disease is horrible and it is a daily struggle to get through because of the pain. We know that stress triggers flares and I have been in a terrible flare due to the stress of my house possible going into foreclosure, and the medical bills piling up. Due to the illness, my hours were cut at work and I was struggling. I am doing my best to work while I still can. No bank would help, so every day I worried what am I going to do? Then through the Facebook myositis support group I came across the financial assistance program info, applied, and was approved! What a huge relief! I am already coming out of this nasty flare because now I will not lose my home! You have no idea how much this means to me to have a program like this to help us while struggling with the disease. Thank you from the bottom of my heart!  — by a Financial Assistance Recipient

Not losing my home
, Financial Assistance Recipient

I am so filled with joy and gratefulness! Not just for the help but how the help has been given with so much support, timeliness, and understanding! I can’t express how much this will help me to become stable in my home! God Bless you all!

Stable in my home
, Financial Assistance Recipient

As a myositis researcher, I support MSU’s mission and their excellent work!!!

I support the MSU Mission
, Rohit Aggarwal, MD, MS

I have only recently been diagnosed with Myositis. This organization has helped me more than I could have imagined. The information on the website is fantastic, the stories from people, etc, Before I found this group I was looking at my life as pretty much over, now I see hope and have learned many ways to help myself. GREAT ORGANIZATION

Now I see hope
, Louise D. , Member and Donor

I just wanted to tell you how important your work has been for me. I have been struggling with DM. Your live chat with Dr Chung from Johns Hopkins has been a major factor in my muscle recovery and everyday well-being. Thank you!

Important Work
, Donor and Member, Fiona

This organization has become an important part of my life since I was diagnosed with a disease I never heard of, Dermatomyositis. My Johns Hopkins Rheumatologist told me about it.

Important part of my life
, Donor and Member, R. Thompson

I have spent many sleepless nights recognizing the commonality we have in such a diversified world of our disease. There are so many ways to live well and choices we have now due to this group. Keeping abreast is the only way for me to make sure I am headed down my path of life with positivism. Thank you, group!

Learning through shared experiences
, MSU Facebook group member

This group has given me so many new friends who are going through the same symptoms that I have. We all can relate to each other on how we feel, whether it’s happiness, sadness, sick, or depressed. I look forward to logging on and talking with everyone

Have made new friendships
Facebook group member

I am a terribly private person, who is not very good at expressing myself, so social media is not something I normally embrace. This page has been a lifeline during the darkest times in my life. When the doctors don’t listen, don’t know, or don’t care, this page has been an incredible source of information. When friends and family can’t possibly understand, this group of people has been an inspiring source of support. At the very least it is a blessing not to feel so alone.

A lifeline in my darkest days
Facebook group member

This group is my go to place. I go here when I’m happy or when I’m sad. I go here to see how my friends are feeling and share in their hope, joy, pain and sorrow. I always find love and support in the light and in the darkness.

Love and support
Facebook group member

This group of wonderful people took me in when was lost and alone and unsure of where to turn with Myositis. They educated me, cared for me and my family. They inspired and supported me and gave me a place to turn in the dark days. They gave me a place to vent when I was down on myself and depressed. They gave me a place to come when I needed to share my accomplishments and cheered me on. There is no way I could repay them for all they have done to give me the spirit to go on. As far as I’m concerned they’re as much of my family as my wife and children. God Bless them all.

Group took me in when I was lost and alone
Facebook group member

I love this group because no one can understand what we are going through except us. When we write negative things, someone out there can relate and it makes the reader know they are not alone. When we write positive things, it gives reader hope. The fact it is online 24/7 and we can connect from all over on our time, in the comfort of our home is priceless. No wasting energy to connect with others. You can sit in your bed and be part of a supportive group. I love this group and have healed a lot through others stories.

Supportive group, always available
Facebook group member

I may not have energy to post everyday but I love reading other’s posts and being a part of their journey. The site is positive when all that’s happening to us can be very negative.

A Positive group
Kim Brooks, DM/Cancer Survivor

There are times when I get up and just need a pick me up from life dealing with DM and this is the one place where I know I’ll find motivation. I don’t know what I’d do without all the wonderful people within this group. It’s hard for me to get my feelings and thoughts about what I deal with to my family and friends, though I know they care, they just don’t fully understand! I love this group so much for being a positive blessing in my life!

One place where I find motivation
Facebook group member

I have DM and this group has given me a place to turn when things get rough. Everyone on this site has a story to tell and they will share their experiences with all. We have cried and laughed together, shared pictures of our pets and families, and given a lot of encouragement to each other.

Encouragement
Facebook group member

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MSU is a charitable organization with 501(c)(3) tax-exempt status. Federal ID #47-4570748.

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