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Myositis Awareness Month, May 2018

Myositis In Focus

Myositis Awareness Month

Myositis In Focus

Myositis Awareness Month, this year led by a patient committee, will focus on the realities of Myositis, both as patients and caregivers. We hope to bring both the difficult journey to diagnosis and difficulty in living with such a rare, often invisible and serious disease, into focus.

Myositis, in our case referring to the Idiopathic Inflammatory Myopathies, is a term meaning inflammation of the muscles. There are several types of this rare, systemic autoimmune disease including dermatomyositis, polymyositis, inclusion body myositis, and necrotizing autoimmune myopathy.

Myositis can cause muscle inflammation and weakness, muscle pain, fatigue, uncomfortable-to-painful and painfully itchy skin rashes, muscle wasting, difficulty swallowing or breathing, and complete disability. The average time for an accurate diagnosis is roughly 3.5 years, partly due to the rarity of myositis.

Myositis is also frequently misdiagnosed, and patients even dismissed by doctors telling them things like: “You just need to lose weight and exercise more,” “It’s just normal aging,” or “This is all in your head.” Some are even being told they are hypochondriacs and need to take a vacation.

In order to bring attention to the realities of Myositis during Myositis Awareness Month, we will help lead conversations surrounding the realities of how individual patients –even with the same disease– can present differently, respond differently to the same therapies, and look differently, in hopes that others will look closer in an attempt to better focus on understanding and seeking knowledge about myositis and its various forms.

Online Education Sessions

Part of our commitment to myositis patients, myositis caregivers, and the public is education about topics surrounding the various forms of myositis.

We have several live, online video education sessions scheduled throughout Myositis Awareness Month, May 2018.

Registration is required for each session. See a listing below. Click on the event title for full information and a link to register. All events are free.

See upcoming live, online patient support sessions. These do not require registration.

There are no upcoming events at this time.

Why do you "Focus on Myositis?"

Take a photo with the Myositis Awareness Sign and Share

Download, print, fill in the blank – write large with a thick, dark-color marker –  and take a photo with it! Get creative and invite others to join in.  Post your sign photo with hashtags #MyositisInFocus and #MyoSelfieSign!

Share with us to be entered to win a Myositis Awareness T-shirt. Random winners to be announced May 28, 2018.

To download and save the sign, right-click the image below and choose “Save As” or “Save image as” or click the buttons to download.

Myositis Awareness Month

Save this image, use your phone to add text, and then share with us and to your social networks!

Author Emily A. Filmore book fundraiser

Emily's Book Fundraiser

For Myositis Awareness Month (May 2018), every book purchased through Emily’s websites, emilyfilmore.com and withmychildseries.com will result in a donation to Myositis Support and Understanding.

Donation amounts: $5/paperback or hardcover, and $1/eBook. No other discounts apply, please email me at info@withmychildseries.com if you have questions before ordering. Offer valid while supplies last.

Myositis in Focus Bracelet

Myositis in Focus bracelets

“Myositis In Focus” handmade aluminum bracelets by Jammin Hammer Jewelry. A generous 25% of sales of this bracelet will come to MSU.

See full bracelet details on the order page.

International shipping now available!

Myositis In Focus, 2018 Awareness Graphics

Use the social networking cover photos and profile photos to help spread the word!

Use the MSU Facebook Frames

We have created several frames you can use on your Facebook profile photo. To apply the MSU awareness Facebook profile photo frames, click on your profile photo, choose Frame, and search “myositis.” Apply the frame.

Facebook cover images

To download, simply click on the image, then right-click and choose “save as” or “save image as.” Each browser will word it differently. Then, visit your Facebook profile and add it as your cover image.

Twitter cover images

To download, simply click on the image, then right-click and choose “save as” or “save image as.” Each browser will word it differently. Then, visit your Twitter profile and add it as your cover image.

Facebook and Twitter Profile image

To download, simply click on the image, then right-click and choose “save as” or “save image as.” Each browser will word it differently. Then, visit your Twitter and Facebook profiles and add it as your profile image.

Graphics for download

Disease-specific,  general myositis, and caregiver awareness graphics are available.

If you are on Facebook, visit our photos section to share.

Or, download the Myositis Awareness Toolkit where you will find all graphics and other materials to use during Myositis Awareness Month, and all year long.

You have a myositis story to share!

Share your personal myositis story, photos, and short videos detailing what myositis looks like to be shared publicly to help others better understand myositis.

Focusing on the realities of myositis would be incomplete without you sharing your photos, short videos, and personal stories for us to share publicly on our website and social media.

Let’s show the world a variety of what myositis looks like. Some may look healthy, some may be covered with itchy-to-painful skin rashes, some walk with a cane, walker or use a wheelchair or powerchair, some wear oxygen and others have feeding tubes and other medical devices. Many have a combination of these. Myositis looks different for each person.

Clinical Trials, In Focus

Myositis patients are needed for clinical trials and research studies. Use our Clinical Trial matching program and tools to find trials for which you may qualify.

We are proud to announce a partnership with Antidote Technologies, a digital health company that connects patients with research, to provide clinical research access and tools to their community.

By providing a clinical trial search engine powered by Antidote on our website, we will help patients find their clinical trial match and accelerate much-needed research in myositis, a chronic inflammatory muscle condition with no known long-term treatments.

Clinical trials need myositis patients. Start your clinical trial match.

Raise Money

Create your very own MSU Fundraiser. Use Facebook, Crowdrise crowdfunding site, or host an in-person event! Let us know what you are doing!

Learn how to create your fundraiser

Donate

Make a donation to MSU and help support our mission and vision, and our programs and services. Empowering the Myositis Community with your help.

See Giving Options

Awareness Toolkit

Download the Myositis Awareness Month, May 2018, Awareness Toolkit and utilize the materials to promote myositis awareness and better understanding.

Download Awareness Toolkit

Ways to promote Myositis Awareness

Promoting Awareness of Myositis can be as simple as talking to your family members and friends about your experiences, ways they can help support patient-centered myositis nonprofits like MSU, and ways they can learn more and get involved.

There are other ways you can help make an even larger impact. Utilizing some of the ideas below can help spread the word to a larger audience. We are happy to help you in any way we can.  Contact us and let us know what you need to make your awareness promotion and fundraising event a success.

  • Contact the health or community reporter your local TV station

    Contact your local TV station or community reporter to go on a local TV show and tell your myositis story. Make it personal to your experiences with myositis and include a very brief explanation about myositis, the importance of awareness, and a little about MSU. We are happy to help you with wording. Just contact us!

  • Contact your local newspaper to run an awareness article

    Contact a local reporter and request they write an article about Myositis Awareness Month that includes your personal experience with myositis and a little about MSU and how we help Empower the Myositis Community. Contact us for help with wording.

  • Send a letter to the editor of print and online newspaper

    Write and share your myositis story and include some information about MSU, which can be found in the Awareness Toolkit, or contact us for help with wording.

    Submit to several local print and online publications. Be sure to check their guidelines prior to submission.

  • Reach out to local and state government officials

    An important way to help promote awareness and understanding is to ensure those who make policies affecting our care are well-educated about myositis and how it impacts our lives.

    Contact your local, state, and federal officials to schedule a meeting. Share your personal myositis story along with how they can contact MSU for more information.

    Order information cards and brochures to provide them with during your meeting.

    Find your elected officials
  • Organize a workplace gathering

    In just 2 hours, you can start off your colleagues’ day by providing a simple breakfast of bagels/muffins and juice, have a brown bag luncheon where you provide dessert, or step out for a lunchtime walk with your colleagues.

    These are times when you can educate your co-workers about myositis and how it affects you personally, and tell them about why you support MSU and ask if they would make a donation to help empower the myositis community.

    You can order brochures and information cards to hand out as well in our <a href=”https://understandingmyositis.org/shop”>Shop</a>.

  • Plan a House Party or Lunch

    A house party is an event, held in your home, in which you invite people you know, and set up to have a featured event during this time like movies, games, contests, or other creative ideas.

    Offer light refreshments, lunch, and/or drinks and during this event, provide your guests with <a href=”https://understandingmyositis.org/shop”>MSU materials</a> and have a fundraising contest. Be creative!

  • Share your content with hashtags, #MyositisInFocus

    When posting to social networking sites, utilize the some of the below hashtags to build upon community-wide myositis awareness content. Learn more about <a href=”https://understandingmyositis.org/use-hashtags-promote-myositis/” target=”_blank” rel=”noopener”>using hashtags in social content</a>.

    #MyositisAwareness, #MyositisInFocus, #TheStruggleIsReal, #MyositisLIFE.

    Share your Story
  • Distribute MSU Brochures, Information Cards, and other materials

    Order <a href=”https://understandingmyositis.org/shop”>MSU brochures and information</a> cards through our Shop and hand out to family members and friends, local businesses, physicians, and other healthcare facilities you visit.

    This is a perfect time to ask if they would support you and MSU with a donation of any amount, either online, via check payable to MSU, or through your own MSU fundraiser.

  • Request Myositis Awareness Month Proclamations

    Request a proclamation from your Governor and/or Mayor of your City.

    Below you will find a download for the proclamation guide and a list of web links for each State, making the request process easier this year.

    Prior to submitting your request, please contact us to ensure the request has not already been made. Having multiple requests for the same state or city can cause confusion and may cancel all requests.

    The following states have already been requested:
    AL, AZ, CT, DE, GA, IN, KS, MD, MS, MI, MO, NV, NJ, NY, OK, PA, TN, TX, UT

    The proclamation sample wording and list of State contacts are also available in the Awareness Toolkit.

    Download Proclamation Guide
    Download State Web Resources

  • Purchase and Gift Awareness Gear

    Purchase “Myositis In Focus” Awareness themed gear in our Cafepress Shop for yourself and as gifts for your family members, friends, coworkers, and others.

    Offering awareness themed golf balls, apparel, maternity apparel, dog shirts, drinkware, lunch bags, totes, and much more.

    Get myositis wristbands, information cards, brochures, pens, and bundles in our onsite shop.

    Visit the MSU Online Shop
    Shop MSU on Cafepress

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Register now for your Free MSU Membership

Join us as a member and you will receive email updates when new awareness materials are available and you will have your very own MSU Myositis Network account and profile, and much more. We are working to improve our onsite community, along with many other tech updates and offerings.

Raise Money for Myositis

Create your own fundraiser

Facebook Fundraiser

Creating your own MSU Myositis Fundraiser on Facebook is so easy! Visit the MSU public Facebook page fundraiser section, and under the header graphic/video, click the blue “Raise Money” button to get started.

Then, customize the image and wording to make it personal to you. Once ready, complete and start sharing. Share your fundraiser, with updates. often.

Create a Facebook Fundraiser

Fundraising with Crowdrise

Crowdfunding campaigns can be a ton of fun! Ask your family members and friends to join the team and then start sharing the campaign.

To get started, click the button below to visit the MSU Crowdrise campaign. Then, click the orange “Join the Team” button!

Posting frequent updates with photos for better success!

Join our Crowdrise Campaign

Make an online donation

As a nonprofit, we rely on donations for the work we do.

We hope you will make a donation by the end of May 2018 for Myositis Awareness Month. We appreciate your support!

Donate Today!

Donate by check

If you would like to make your donation by mailing a check, please make your check payable to MSU and mail to:

9125 N. Old State Road,
Lincoln, DE 19960

If you would like to make the donation in honor of or in memory of your loved one, please include a note with the information.

Myositis Awareness Toolkit

Utilize the resources provided in the 2018 Myositis Awareness Toolkit to make a larger impact!
Toolkit updated May 2, 2018, at 11 pm EDT. 

Download the Awareness Toolkit

© Myositis Support and Understanding Association, Inc. 2010-2018. All Rights Reserved. MSU is a patient-centered 501(c)(3) nonprofit organization.

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