Moment of Silence
A moment of silence was observed on Sunday, May 28, 2017 at 2PM EDT. Myositis Awareness Month is also a time to honor and remember those we have lost and to encourage those still fighting.
With Myositis Sometimes Zebras Have Spots
The 2017 MSU Myositis Awareness Month Theme is “With Myositis, Sometimes Zebras have spots!” We want to raise awareness about how the experiences, symptoms, and complications of this rare disease are different, even among the patients with the same disease.
The Zebra is the recognized symbol for rare diseases. This campaign features a Zebra with spots. The spots indicate unique aspects of how patients and caregivers experience myositis in many different ways including complications, hardships, how it affects everyone surrounding the patient, the creativity of patients in creating and building their own assistive devices, etc.
Doctors are now being trained when you hear hoof beats, look for zebras (rarities), instead of horses (common ailments); when in the past, they only looked for the most common ailments.
Through our public education and support of our members, plus our financial assistance program, MSU helps patients deal with the rare “spots of the zebra” called Myositis. We will be releasing a “spots” sheet that includes talking points to go along with our featured theme and when wearing the t-shirts and hoodies we sold prior to Awareness Month that are sure to start conversations.
Myositis 'Spots' Talking Points
The MSU ‘Spots’ talking points sheet is a part of our campaign to explain how rare Myositis is and the different complications and ways it affects the patient and everyone in the patient’s life.
Download and share this document with your friends and family members for maximum impact in helping to educate and raise awareness. Also if you purchased our Zebra shirts, they are bound to create conversation. This sheet will be helpful for you when having those discussions and telling your story about living with myositis.
MSU Awareness Month Press Release
Take a look at the MSU Myositis Awareness Month Press Release. It provides an abundance of information about what we are planning for the month including education, awareness, a planning survey for your voice to be heard in helping move forward, events, and much more.
We will be updating our Facebook page along with this page with more details as we move forward through the month. Sharing this press release is also a great way to ensure your family members and friends are a part of every aspect of what we are doing for awareness month and it will also help them to better understand myositis.
Are you an adult living with Dermatomyositis?
Investigators are seeking people with dermatomyositis to participate in a phase 2 clinical trial of the experimental drug IMO-8400. The goals of the trial are to evaluate whether IMO-8400 can be given safely and if it can improve DM-related skin lesions and muscle weakness. The biopharmaceutical company Idera Pharmaceuticals is the clinical trial sponsor.
While the cause of dermatomyositis is unclear in most cases, it is known that ongoing inflammation triggered by the disease, over time, leads to destruction of muscle, skin and other tissues. IMO-8400 is designed to inhibit the activity of key regulators of the immune system, called Toll-like receptors (TLRs). By inhibiting TLRs . . .
NOTE: Some eligibility criteria have changed and PIONEER is still recruiting. Jerry Williams, the Founder and President of MSU will speak at Idera on May 25th as part of our mission to educate.
MSU focus for 2017 Awareness Month
To raise awareness of this complicated, rare disease, MSU has scheduled many activities to promote awareness and education:
- “Sometimes Zebras have Spots” T-shirt Campaign and Talking sheet. We have had our best T-Shirt campaign yet, selling shirts with our awareness theme, a spotted zebra, which will be accompanied by an information sheet giving members talking points about the “spots” of myositis. Download talking points here
- #PutaFacetoMyositis – We’ve invited members to share their own “Spot” stories of a difficult diagnosis, rarity, adaptation, they have made, or side effect of medication to be placed on an interactive Zebra graphic on our website.
- Strategic Plan Survey – MSU is committed to making its actions be a better and better reflection of its members. As such, we are asking our members to speak up and share their voice by participating in our strategic planning by filling out an important survey about our services and platforms, as well as where they would like to see us go in the future. This will further help us #PutaFacetoMyositis and make sure we have accounted for all the “Spots” of myositis. Survey is now closed.
- Video Sessions – We have scheduled interactive video sessions to entertain, build community, educ8, and advo8 for ourselves. And, we are in the final stages of planning an “Exercise and Myositis” video education session with one of our medical committee advisors, Dr. Tae Chung from Johns Hopkins Myositis Center. Visit our events page for more.
- Social Media outreach – As always we want to increase awareness of myositis so we have again enlisted the Thunderclap tool. This helps us to multiply our reach exponentially. We ask that our members, and their friends and family members, add their social strength by joining the campaign.
- Educational Outreach – The President of MSU, Jerry Williams, has been invited to speak about MSU and Myositis at Idera Pharmaceuticals Pennsylvania location on May 25th. Jerry will speak about his experience in living with Polymyositis, discuss the other forms of idiopathic inflammatory myopathies (myositis) such as Dermatomyositis, Inclusion Body Myositis, and the Juvenile forms of Myositis, in an effort to educate and promote awareness to the employees of Idera. Heather Spadaccini, a friend and often care partner for Jerry, will speak about how frightening this disease can be and some of the complications she has witnessed along the way. As this disease affects everyone around us, hearing from a friend and care partner helps others to better understand this disease. MSU collaborated with Idera on their clinical trial that is still recruiting for the experimental drug IMO-8400 for adults with Dermatomyositis.
- Fundraising – MSU operates an all-volunteer board and staff, but our programs cost money. We run three major Facebook support groups boasting over 2000 members, we have an interactive membership website full of resources and ways to connect, we offer regular video chats, we have a financial assistance program that provides funds to myositis patients in need of financial help for medical expenses, medical travel, and household expenses, and we continue to listen to our constituents to build new programs where needed. To ensure we continue to have available funds to continue our important work we ask that you consider donating at least $25 during the month of May or even setting up a recurring donation on a monthly or yearly basis.Support our mission and our work by making your contribution at UnderstandingMyositis.org/donate or at https://www.crowdrise.com/with-myositis-sometimes-zebras-have-spots/fundraiser/myositis
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