TMA’s 2019 Annual Patient Conference was another amazing event! Each year the Conference provides those who live with myositis the opportunity to gather to learn about their disease as well as to meet and share experiences with others who understand their challenges.
Nearly 500 people attended from all over the US as well as folks from Canada and Europe, nearly half of whom were first-time attenders. They participated in nearly 90 educational and support sessions focused on the theme of “Who you are matters,” offering insights that address individual differences in myositis diseases.
The Conference kicked off with a representative from Senator Amy Klobuchar’s office welcoming us to Minnesota. Outreach Director Sarah Franz provided an update on Senator Klobuchar’s extraordinary efforts on behalf of those who live with rare diseases like myositis as co-chair of the Congressional Rare Disease Caucus.
Psychologist Mary E. Siegel, PhD, coauthor of Sick and Tired of Feeling Sick and Tired, offered a keynote address on a topic near and dear to those with myositis: “Living with Invisible Chronic Illness.”Throughout the Conference, myositis experts from TMA’s distinguished Medical Advisory Board not only offered talks but generously spent extensive time responding to individual questions from attendees.
In addition to disease-focused talks, this year’s Conference program addressed several new areas of interest. Mental health was a particular focus, with sessions allowing individuals to share issues related to psychological concerns as well as a panel of mental health experts offering resources and advice. Several sessions also focused on the needs of care partners, including several sessions addressing emotional needs as well as demonstrations of how to manage their loved one’s physical needs.
Conference sessions also offered practical skills for those who want to help TMA spread awareness of myositis. Workshops were available to learn how to start a TMA support group, how to more effectively tell your myositis story, how to fundraise, and how to advocate for public policy changes. A panel of experts also discussed how those who live with a rare disease can advance the search for a cure by participating in clinical trials.
The Conference was not all work, however. A wine and cheese reception, held on Thursday evening, encouraged attendees to “show their stripes,” a reminder of the saying that rare disease patients are as uncommon as zebras. TMA provided attendees with travel tips with the assistance of a certified accessibility travel expert who has over 25 years of experience in the field. Many lasting friendships were made through networking opportunities as attendees dined with others from their own geographic locations and met others with their type of myositis.
If you weren’t able to attend this year’s Annual Conference, we hope you will consider joining us next year. (The location is not yet finalized, but we will let you know soon where it will take place.) You can also see slides and videos from many of this year’s talks posted here.
The 2019 Annual Patient Conference would not have been possible without the generous support of our sponsors, including our platinum sponsor, Mallinckrodt Pharmaceuticals, and gold sponsor, CSL Behring.
TMA would also like to thank CSL Behring and Dr. Robert Wortman for sponsoring the 2019 Myositis Medical Symposium where myositis experts from our Medical Advisory Board shared current research results with healthcare professionals. The Symposium took place on Friday during the Annual Patient Conference.