Mark Your calendars for May 2 & 3, 2025 for the
2nd Annual Myositis Moon Walk!
The Myositis Moon Walk, a collaboration between Myositis Support and Understanding (MSU) and the Myositis Moon Walk team, aims to raise awareness and education about Myositis, a rare autoimmune disease which can cause muscle weakness, inflammation, pain, and fatigue. Myositis affects people of all ages, mimicking other illnesses, making diagnosis challenging.
Join patients, caregivers, families, and friends on May 3rd, 2025, at the U.S. Space and Rocket Center in Huntsville, AL for the Myositis Moon Walk.
Patients and caregivers need emotional support, financial aid, and understanding. Fundraising is vital to advance research, develop effective treatments, and ultimately find a cure. The Myositis Moon Walk promotes education and support for patients, caregivers, and healthcare providers.
Every Step Counts!
Launch Crew Volunteers Needed!
Calling All Myositis Champions!
Join us for the 2nd Annual Myositis Moon Walk on May 2 & 3, 2025! This inspiring event, held at the U.S. Space and Rocket Center in Huntsville, AL, is a collaboration between Myositis Support and Understanding (MSU) and the Myositis Moon Walk team.
The Myositis Moon Walk is more than just a walk; it's a movement to raise awareness and education about Myositis, a rare autoimmune disease that can cause muscle weakness, inflammation, pain, and fatigue. By participating as a volunteer, you'll be playing a vital role in supporting this critical cause.
We are actively seeking volunteers to help with various tasks, including:
Sponsor and Donor Recruitment: Find businesses and individuals who are passionate about supporting our mission.
Fundraising: Assist with fundraising initiatives to ensure the success of the event.
Volunteer Coordination: Help us assemble a team of enthusiastic volunteers for the event day.
Event Day Support: Be a part of the event day magic by assisting with set-up, registration, and other logistical needs.
Every volunteer makes a difference! No matter your skills or experience, there's a place for you on the Myositis Moon Walk team.
To sign up to volunteer, fill out the form below or by visiting https://forms.gle/2JvLUZrDFLV2rdMG6.
You may also contact Benita Moyers at benita@understandingmyositis.org.
Let's walk together one small step at a time for our Myositis family.
Myositis Moon Walk 2024 Highlights
Meet the Organizers
Meet Stephen and Shaylee Moore, Benita Moyers, and Mollie and Jessica Preston. This small group of Myositis patients and caregivers wanted to gather Myositis patients across Alabama together for an awareness walk. This led to the idea to start the first ever Myositis Moon Walk.
Learn more about the organizers of this event on the About Us page.
In loving Memory of Alicia M. Perez-Yeary
November 6, 1964 - May 26, 2023
Myositis Moon Walk honors the memory of Alica M. Perez-Yeary.
Alicia was a beloved member of our support groups. She was diagnosed with Polymyositis in the fall of 2013. She visited UAB every 3 to 6 months depending on how her disease was progressing at the time. Alicia and her husband Gary were fortunate that they were able to work together and travel the U.S. during her illness. In the fall of 2018, her Polymyositis had caused her heart to enlarge and created a problem with one of her valves. She was denied surgery to replace the valve, surgery for a LVAD (left ventricle assist device), and a heart transplant twice. At that time, she was given one year to live.
They were fortunate that Gary was able to take time off work to spend that year with her. Gary says, "Through the grace of God, she survived for 4 1/2 years after her initial diagnosis. They enjoyed traveling to the Caribbean and parts of Europe." Gary is glad they were able to make her last years enjoyable.
Gary and Alicia were very grateful that they were able to meet other patients, caregivers, and medical personnel during her illness. The Strength Through Knowledge Alabama Myositis group provided friendship, support, and laughter. They also led Alicia and Gary to the support groups at Myositis Support and Understanding - MSU even more support and friendship.
Gary says, "Without the help of these two groups, this would have been a long and lonely journey. Myositis is an awful diagnosis, but with the help of these groups, we were able to gain wisdom about daily life with the disease, what to expect, and what the progression may be for her. I love you all for your kindness and help."
The Myositis Moon Walk team and MSU appreciates the generous donation made to help other Myositis patients around the world. Please join Gary and our group as we walk in Alicia's memory on May 4th and spread Myositis Awareness One Small Step at a Time.
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