Overview of our Programs and Services
Online Myositis Support
Our online support groups started in 2010 and are the basis of us eventually applying for and being approved as a 501(c)(3) nonprofit organization!
We take online support seriously. We operate four closed Facebook support groups designed to help Myositis patients, caregivers and care partners, family members, friends, and those who are suspected of having Myositis and are currently undergoing extensive testing.
Our support groups stand apart from the others in that we offer emotional support and laughter while also educating our members to help them learn as much as possible about Myositis and self-advocacy.
We hope you will request to join the online support group best designed for you!
We provide education through several outlets; our blog, social networking, and through our e-mail newsletter.
We provide experience and research-based education. Every piece we provide is either based on research we do, our personal experiences, or the personal experiences reported to us by our members. We do not provide medical advice and anything we post should not be misconstrued as such.
We are dedicated to helping everyone learn as much as they can in order to take control of their health and effectively advocate for themselves. You can share your story with us to be featured on our blog and social networking by visiting the Share Your Story page.
Financial Assistance Program
Due to the rarity of the disease, and the fact that many doctors may only see one patient, if any, with Myositis in their careers, 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. Therefore, we have worked tirelessly to raise funds to establish this Financial Assistance Program. Through it we will provide funds to patients for travel to see known myositis experts for diagnosis and treatment, help with medical expenses, and emergency household expenses due to the overwhelming costs of living with a chronic illness.
MSU hopes through these funds, to provide much needed financial relief to patients, whose lives are already stressed due to illness, allowing them to more fully concentrate on their health. Patients who qualify will be eligible for a maximum of $1000 per year, based on a number of factors defined below and on the application itself.
Letter Writing Review
One of Emily Filmore’s goals, as an MSU Board member, has been to find a way to provide a direct service to Myositis patients. As a published author, she has extensive experience with writing and editing. She has decided to make the following FREE offer to our members:
“If you are writing a letter to your legislator, insurance company, disability, or anything else having to do with fighting for your rights pertaining to your Myositis, and would like another pair of eyes to review it, you can contact me. I have a couple of caveats: 1) my opinions are just that, my opinions. By enlisting me to review your letter you agree to hold me, and Myositis Support and Understanding Association, Inc., harmless for my opinions, in the end you must send the letter you feel comfortable with and you alone must decide if you will take or leave my advice; but either way, we are not responsible for the final product, 2) Due to my other commitments and being ill as well, I can only accept one (1) letter per week, letters will be reviewed in the order I receive them and you are free to proceed without me if I get backed up and you don’t want to wait for my assistance, and 3) I will request seven (7) days to complete my review, in most cases I will be able to return much faster; but if I am on another deadline, traveling, or just feeling sick, I need to have wiggle room.”
As a part of our new Mission and Vision statements, amended November 20, 2015, we will be offering advocacy as a part of “What we do.”
We have thought long and hard and have come to the conclusion that Myositis patients need a voice, and a loud one, at every level of policy-making, with insurance companies, and with other medical decision-makers.
As a rare disease, Myositis can often be overlooked and misunderstood. We will help to be your voice of change. Contact us with any pressing issues you think we need to tackle in the short-term.
Get Well Card Program
We care about our Members and worry about them. When we are made aware that a Myositis patient is not feeling well or is in the hospital, we send out a get well card to help inspire them to keep fighting!
If you know someone who needs a card, please contact us with the name, mailing address (whether it is a home address or hospital), and any other details that would help us tailor the card to them.
We have found this seemingly small gesture truly brings joy to the patient.
How to help fund our programs and other activities
Nonprofits cannot exist without funding in the form of donations, grants, and other creative ways.
Below are some resources you can use and share to help support MSU by getting your family and friends involved.