A 2016 Holiday Message of Hope and Joy

You are rare

No matter what holiday you celebrate, this season has become universally known as a time for each of us to pause to extend an extra measure of gratitude, kindness, and compassion and to thank those who have made a positive impact in our lives.

It can also be a season that accentuates exclusion and loneliness for those who have Myositis and other chronic illnesses.  Holidays can be especially challenging when mobility issues and fatigue may curtail activities, and financial disparities seem to be brought to the forefront as we want to give gifts to those we love.  We may also sense that family and friends lack understanding about how the disease impacts us, which may lead to feelings of frustration and maybe even resentment rather than joyfulness.

We hope that your involvement with Myositis Support and Understanding (MSU) has allowed you to feel more included and has provided you with a platform for you to interact with people who share your concerns and frustrations.  We sincerely hope that we have helped you feel more understood, valued, and joyful.     

My gratitude and joyfulness are extended to each of you for contributing to the success of MSU. We certainly cannot do it without you, and you continue to provide me, and our other team members, with the inspiration to keep moving forward in providing you with the programs and services you need.   

Thank you, MSU members and our support group members, who freely share your insights based on your own experiences and lend a sympathetic ear when you see others are struggling.  We feel we have built a family, and one that we cherish.

We sincerely hope that we have helped you feel more understood, valued, and joyful.     

Thank you to the Board of Directors, our group administrators, and others who continue to give of their time, often when struggling with the effects of our disease.  The efforts you put forth to educate and advocate for Myositis are invaluable.   

And, thank you to those who contribute financially to help support our mission and vision. Nothing we do would be possible without your financial support so please know you are making a difference.

In the coming New Year, 2017, we have many plans to continue the work we have started with a huge focus on building and utilizing our volunteers, fundraising, financial assistance, and education. We are continually building resources and making contacts in the myositis community that will further help us reach our goals. But, we need you to get involved! You can join the MSU team as a volunteer, group administrator, or, if you have some experience, join us on the Board of Directors. I appreciate anything you can do!

What began as one bewildered person diagnosed with a rare disease who was seeking understanding in 2005, has blossomed into a vital, patient-centered organization focused and dedicated to improving the lives of those living with, or caring for someone they love living with, the often misunderstood disease, myositis.

Each of you continues to bring joy to my life and I wish you a Merry Christmas and a Happy Hanukkah. To those who celebrate other holidays during this time, please know we wish you Happy Holidays! And, of course, we wish you a bright and happy New Year!

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Profile photo of Jerry Williams

Author:

Jerry Williams, the Founder and President of MSU, was diagnosed with Polymyositis in 2003 at the age of 27. Since his diagnosis, Jerry has made it his mission to help others living with the rare disease, Myositis. To this effort, Jerry is involved in many different aspects such as education, writing, helping support and answer questions from patients and caregivers, social networking and website development, and much more.

View more information: Jerry Williams

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Campaign for Myositis Awareness Month, May 2017

Purchasing a shirt from this booster will help us, Myositis Support and Understanding, with our many patient support programs, education, financial assistance for patients and upcoming programs.

This year, 2017, Myositis Support and Understanding’s awareness month theme is “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. Doctors are now 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.

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Hi, this may be interesting to you: A 2016 Holiday Message of Hope and Joy! The link is included below: https://understandingmyositis.org/2016-holiday-message/ --- Myositis Support and Understanding is a 501(c)3 nonprofit organization.