Day-by-Day is the Myositis Way!
Myositis Support and Understanding Association’s theme for Myositis Awareness Day 2015, and our ongoing slogan is “Day-by-Day is the Myositis Way!” This sums up so much about life with Myositis including the need to take each day as it comes and appreciate the good days while respecting the bad. It also explains our inability to make or keep plans and promises to friends and family members as each day our health may be unreliable. For example, one day we may be able to walk a mile but pay for it over the next few days by having to rest or even stay in bed all day. We struggle at times to learn our “new normal” and how not to overdue it, or what our limits may be as they can change throughout our life.
Myositis Awareness Day 2015 is fast approaching and here are a few things you can do now. Visit our Awareness page for full details.
- Write or Video your Myositis or Caregiver (Care partner) story to share with us. We will post it on our website, in our support groups, and on our social networks.
- Subscribe to our online email newsletter updates to keep informed, learn about events, and for special offers and new product additions to our store.
- Reach out to your local media to share your story and MSU’s. Contact us for help with wording, if needed.
- Host a Myositis House Party to have fun while sharing your journey and raising funds for MSU.
- Text to Donate to TMA – See details on Awareness page
- Make a donation to MSU to help us help the Myositis community. You can also make a donation in honor of or in memory of someone. Also, purchase Myositis Awareness items such as pens, wristbands, and information cards.
Jerry Williams, Founder and President of MSU, has two TV appearances booked. They are scheduled Friday, September 18th and Monday, September 21st, in his local area in Delaware, where MSU is incorporated. Jerry has also recently done several newspaper interviews. These are all things you can do, too, to help spread the message!
About Myositis Awareness
Ultimately, a large part of Myositis awareness is to obtain funding. Let’s face it; a nonprofit cannot exist without donations. We operate on a full volunteer basis, which allows us to use 100% of donations for furthering our mission. From simple things like printing flyers, information cards, and articles; to more complex things such as creating programs and assisting patients who require financial assistance for second opinions and medications not covered by insurance. Without funding we won’t be unable to fully work toward our mission nor will we be able to provide the programs and assistance that so many Myositis patients need.
This is where, you, our friends and support group members come in. You can help us make a difference in so many lives. We know many of our members are experiencing financial stress, so if you want to know a way to help, there is always work that can be done! Volunteers are needed. Sharing information about our organization with your community will also help us by spreading awareness and bringing in donations. If every single group member shared information about MSU with friends and family, and encouraged donations, we could raise the money we need to get our programs started immediately!
We encourage you to share information about MSU in a personal way; people want to know why MSU means something to you! Some ideas for effective sharing include:
- Inform your friends and family about how living with Myositis affects you
- Include the symptoms you experience and what a “normal” day is like for you
- Let them know that there is no cure for your rare disease
- Explain that treatments are often as devastating as the disease itself
- Share what our support groups do for you or how they have helped you
By letting others know the details of your disease they are more likely to understand and realize the need for MSU’s work. This will in turn encourage donations further aiding MSU’s position to help patients and to bring about change in the ways Myositis, as a debilitating disease, is viewed and handled within society. With your help, we can help other associated organizations get Myositis the attention its patients deserve, including the different types: polymyositis, dermatomyositis, inclusion body myositis, juvenile myositis/dermatomyositis, and ocular/orbital myositis.
Patients need specialized treatment options, not just hand-me-down, or orphan drugs designed for other autoimmune diseases. Care partners and caregivers need education on how to help their loved one and themselves. The healthcare community needs to be educated about what Myositis is, how it’s diagnosed, treated, and managed. Physicians need to learn even more about Myositis and the symptoms that may be overlooked such as pain and fatigue. We can help encourage researchers to find new and more beneficial treatment options by raising awareness, encouraging innovation, and supporting other organizations in their current endeavors.
A little background about MSU – We first started as “Polymyowhat: Understanding Myositis” in 2010 and included a Facebook support group and personal blog. Over the years we evolved, including a name change to Myositis Support and Understanding (MSU), the addition of new, specialized Facebook support groups, many additions to our website, and adding Emily Filmore as one of the founding directors alongside Sandy Block and me. We started operating as an organization in January 2014 and after much hard work we officially became incorporated on May 13, 2015 in the State of Delaware. Exactly 18 months from our unofficial organization setup and just over two months after becoming incorporated, we received our approval from the IRS on July 30, 2015 that Myositis Support and Understanding Association is now a registered 501(c)(3) nonprofit.
Our working Board of Directors is currently responsible not only for board duties, but also the day-to-day operations of the organization. This helps keep us lean, efficient, and involved in every aspect of the organization as we grow. The Board also ensures each dollar donated is used, fully, to cover costs associated with being a new nonprofit. We are working to plan education programs for patients, caregivers, and healthcare providers. We want to increase knowledge about this rare, incurable autoimmune disease, and to help begin funding our future patient assistance program.
Our board is a team and we work side-by-side to consistently serve our constituency and provide top-notch support to over 2000 members. The board currently includes: Jerry Williams, President; Emily A. Filmore, Vice President; Sunshine Hughes, Secretary; and Carol Lopez, Treasurer. Each board member goes above and beyond the call of duty as they have a passion for helping others with Myositis.
We would be remiss if we did not thank others who have helped make us who we are. We want to personally thank: Scott Filmore, our pro bono attorney, Sandy Block, former Vice-President and current Volunteer, the U.S Pain Foundation (for having us at their March conference this year), the Team Tommy Foundation (for all of their help answering our “how-to become a nonprofit” questions), and The Myositis Association (for their willingness to work together and for providing us an exhibit table at the 2015 Annual Patient Conference in Orlando, Florida).
Another important part of our team is our Facebook Group Administrators, lead by Maureen Crowley. Our admins are passionate about helping Myositis patients, often researching behind the scenes to ensure our groups are well-informed and learn as much as possible about their disease. They are on the front lines, so to speak, and help to make our groups the very best. Be sure to meet our team!
We will soon be sharing some exciting information, tools, and programs. Be sure to stay tuned! It is easy to keep up-to-date with MSU by subscribing to our online email newsletter.
Your help is needed!
September 21st is an important date for us but it should not define how we move forward as everyday should be awareness day. There is no cure for any form of Myositis so we must work hard until there is.
Can you make a $10 (tax deductible) donation today to help us spread awareness and serve our mission to better the lives of Myositis patients and caregivers? Or, are you willing to ask your friends and family members to contribute by explaining why MSU is important to you?
Join our email updates and newsletter
Subscribe to our general myositis-related email updates. If you are a member of MSU, you will automatically recieve these updates and there is no need to subscribe here. To register for your free MSU membership and access to The Myositis Community Network, visit UnderstandingMyositis.org/register