CRD Associates joins the Myositis Association’s annual conference in St. Louis, MO.
Each September, the Myositis Association hosts its annual MyoCon conference bringing together families, myositis specialists, and expert presenters to discuss everything related to myositis, its treatment, and how patients can live their best lives with these debilitating diseases.
Myositis refers to a set of rare autoimmune diseases involving chronic inflammation of the muscles. This often occurs together with other symptoms, including pain, fatigue, trouble swallowing, and others that vary by myositis type. While there is no permanent cure for chronic forms of myositis, treatments that aim to reduce inflammation, manage symptoms, and preserve mobility are available for some patients. Overall, more federal investments are needed to understand the disease, improve diagnostics, and find a cure.
Mark Vieth, Senior Vice President and I (Grace Kranstover, Vice President) had the opportunity to attend this year’s event in St. Louis, Missouri. During our time at MyoCon, Mark and I presented “Rare Disease, Real Power: Why Myositis Advocacy Matters More Than Ever” during which we covered how the legislative process works, what The Myositis Association’s legislative priorities are, and why advocacy is so important. We also discussed how easy it is for participants to get involved and connect with their legislators, and how advocacy can help to secure more federal dollars for research and ensure veterans obtain disability benefits after a myositis diagnosis. The more myositis advocates who engage with their legislators, the greater visibility this rare disease will gain, helping policymakers better understand the challenges patients and families face and the urgent need for increased investment in research, improved treatments, and patient support.
Throughout the conference, Mark and I had the opportunity to meet several dozen patient advocates who passionately spoke about their experience living with or caring for a loved one with myositis. Mark and I are privileged to have been a part of MyoCon and look forward to continuing to work with the community to elevate myositis-related issues and voices, educate policymakers, and influence decisions on public health policy.
