As we at Myositis Support and Understanding Association (MSU) commemorate National Myositis Awareness Month by placing Myositis In Focus, I would first like to put my own appreciation into focus. I am grateful for the trust you have placed in me, our board of directors, our support group administrators and volunteers, and in each other by providing meaningful support for fellow myositis patients and caregivers. I also thank the members of the patient-led myositis awareness committee for the work they have done in organizing this year’s awareness programs and materials.
This year, Myositis Awareness Month coincides with MSU’s third anniversary as a non-profit organization. As the Founder and President of MSU and a patient with myositis, I am honored to be a part of representing the Myositis Community at such an important and exciting time. Three years ago, the Founding Board and I would not have believed it if you had told me how much this organization would accomplish in such a short period; nor would I have been able to imagine the progress that would be made in the field of myositis. Committed myositis physicians, scientists, researchers, and pharmaceutical companies have made great strides over the past few years that should remind us all that while we may feel that we have little or no treatment options, there are many promising things in the works that deserve our attention and appreciation. New treatments could be just over the horizon!
During my tenure as president of MSU so far, we have seen an increase in myositis clinical trials, especially for dermatomyositis and inclusion body myositis. There have been many newly published research studies that are helping us all better understand myositis. The recent release of new diagnostic and clinical trial criteria is a major breakthrough; one that will help patients get a faster and likely more accurate diagnosis and provide them with a chance at a better life.
Throughout May, Myositis Awareness Month 2018, we want to bring emphasis to these important factors. Our theme, Myositis In Focus, will “focus” on the realities of myositis through education, outreach, and fundraising. We want to tell the world what myositis is, show them what it looks like, and start meaningful conversations to bring our rare autoimmune diseases into “focus.” We have provided many ways for you to be a part of awareness building activities this year. To help guide your efforts we have created a toolkit that you can download and utilize to make a large impact.
We want to bring awareness and our gratitude to our caregivers and their relentless pursuit to ensure we are well taken care of, often spending hours each day providing for our needs, advocating for our health, and being there for emotional support. A spouse and caregiver of a patient with polymyositis has provided us with a day-by-day listing of caregiver affirmations that can help caregivers focus on themselves and realize how special they are, and our wish for them to care for themselves.
Like patients, caregivers have always been a part of MSU and continue to be leading players in how we move forward. MSU has a unique perspective on what is needed in the myositis community as a nonprofit organization founded by myositis patients, for myositis patients and caregivers. We have many opportunities and ideas and we are only limited by funding.
With increased funding, we can begin to remedy some of the major hurdles we as a community face. There is an urgent need for education at all levels, increased awareness, assistance for the devastating financial effects of myositis, safe and effective therapies for all forms of myositis, and a need for myositis patients to participate in clinical trials.
As an organization, we have helped more than 4000 people in our online support groups, awarded over $25,000 in financial assistance for emergency household expenses, medical needs, and medical travel to see myositis specialists in the past 24 months, written numerous articles and blogs, and hosted 60+ online video support, education, and activity sessions. We have worked in the past 18 months to forge sustainable relationships with pharmaceutical and clinical trial partners so that we can facilitate patients finding drug trials for which they may qualify. But like all our other programs, these relationships take money, time, and human power to administer, and funding makes all the difference.
We must never forget those we have lost to myositis. This year we have decided to do more to remember and honor those who have passed away from myositis and complications associated with myositis. On Sunday, May 20, 2018, we will host “Myositis In Focus: A Day of Remembrance” in partnership with our caring sponsors, Corbus Pharmaceuticals, Idera Pharmaceuticals, and Diplomat Specialty Infusion Group. This live streaming YouTube video event will begin at 2 PM EDT.
Remember, together we are unstoppable and we can meet and exceed what is possible. Join us today to make a difference by downloading the Myositis Awareness 2018 Toolkit, signing on to the Thunderclap, sharing your #MyoSelfieSign Photos, sharing your Myositis LIFE, utilizing social media graphics and disease-specific information sheets, and creating your MSU myositis fundraiser. Register to attend live online video education sessions that interest you. (View the MSU awareness page for full details.)
Invite your family members and friends to participate together in what you choose to do for awareness month.
Again, thank you for your continued support. Please reach out to me if there is anything I can do to help you participate in our activities. Now, let’s get our Awareness On and reach hundreds of thousands of people across the United States and the world, by asking them to look closer and put Myositis In Focus.
(MSU is a patient-centered 501(c)(3) nonprofit organization empowering the myositis community. Donations are tax-deductible in the U.S.)
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