On the Lunar New Year Calendar, 2022 is the year of the Tiger and MSU will come out roaring!
Many of you know Myositis Support and Understanding (MSU) as an organization providing patient and caregiver support, education, and needs-based myositis patient financial assistance. And while all of this is true and always a priority, I would like to introduce you to our work in patient-centered research.
Over the past year, we have been working on a patient-centered research strategy that puts the patient front and center in every collaboration we enter. Our research efforts will focus on (1) the everyday improvement of patient quality of life, (2) grants for studies that impact near term functional diagnostic and treatment improvements, and (3) partnerships with academia, industry and government agencies to understand disease evolution and subtype response to advance research in drug treatment and improve clinical trial design.
It is to this end that I am honored to announce that MSU will be hosting the first FDA (Federal Drug Administration) Listening Session on Adult Dermatomyositis on April 26, 2022. The FDA Listening Session is an opportunity to facilitate the sharing of the patient perspective with the FDA and interested departments. This is a closed meeting and will not be live-streamed, recorded, or open to the public.
This will be a patient-focused session, centered around the unique experiences of dermatomyositis patients and caregivers. Our intent is to give the FDA an appreciation of the diversity of this disease area – both the range of symptoms and severity of complications. We hope the FDA will come away with an appreciation that clinical trial development for DM is not a “one size fits all” approach and better understand the unique lived experience of the DM patient.
I am excited that YOU, the MYOSITIS community, will be center stage in this very important conversation, and grateful for the work of the MSU Research Team, headed by Lynn Wilson, VP and Director of Patient-Centered Research, Manuel Lubinus, Research Advisor, and Dr. Salman Bhai, Medical Advisor.
This is just the start, and in the coming months, you will be hearing more about other projects we are partnering on to improve the lives of and empower ALL who are impacted by Myositis!
For more information about our patient-centered research efforts, including opportunities for myositis patients to be a part of research from home, visit the Research section of our website or contact the MSU Research team at Research@understandingmyositis.org.
With Gratitude,
Jerry Williams
Founder and President
Myositis Support and Understanding Association, Inc. (MSU)
