Myositis Moon Walk

The Myositis Moon Walk team has partnered with Myositis Support and Understanding (MSU) to increase awareness and education of Myositis, a rare inflammatory autoimmune disease.  This life-threatening disease, for which there is no cure, causes muscle weakness, inflammation, pain, skin rashes, lung disease, impairment in swallowing, and life-altering fatigue. It affects approximately 5 out of 1 million people a year.

The purpose of this walk is to spread awareness about the disease and provide support for the patients impacted in Alabama and Southern Tennessee.  It is being highlighted as a part of national May Myositis Awareness Month.  Patients from all over the region will join together in the Rocket City on May 4th, 2024 to take one small step at a time to launch the voice of the patients and their families that live daily with this disease.

There are several types of Myositis.  These include Antisynthetase Syndrome (ASyS), Clinically Amyopathic Dermatomyositis (CADM), Dermatomyositis (DM), Immune-Mediated Necrotizing Myopathy (IMNM), Juvenile Myositis (JM), Polymyositis (PM), Sporadic Inclusion Body Myositis (sIBM), and Mixed Connective Tissue Disease. There are also subtypes based on Myositis Specific Antibodies.  Some of these subtypes have a very poor prognosis.

There is no cure for any form of Myositis and only limited  FDA approved treatment options, which can have life altering side effects. Due to the rarity of Myositis, there is often a delay in diagnosis or misdiagnosis causing a delay in potentially effective treatments that may lead to permanent muscle loss.

Education and support for patients, caregivers, and healthcare providers are essential to the overall health of patients. Myositis can affect both children and adults of all ages with symptoms often developing over weeks, months or years while often mimicking other less-rare diseases.

Myositis affects every aspect of patients’ lives, including but not limited to emotional and physical relationships with family, friends, and co-workers.

Patients and caregivers deserve emotional support, financial assistance, and understanding. Raising awareness and funding are important factors in advancing research and developing new, less-damaging treatments with the ultimate goal of finding a cure for Myositis!

Join our team or make a donation to support the MSU in finding new treatment options for muscle diseases such as Myositis.

 See you at the Myositis Moon Walk!