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What will you get from this webinar?
This webinar is presented by Sara Sabbagh, D.O., Clinical Fellow, Muscle Disease Unit at the National Institute of Arthritis and Musculoskeletal and Skin Diseases at the National Institutes of Health (NIH). REGISTER NOWMUSIC TO INSPIRE
Lisa Sniderman is a writer and musician from San Francisco who lives with dermatomyositis (DM). She’s been involved in the adult DM community for years, and when she was invited to perform at the 2011 The Myositis Conference in Las Vegas, she was introduced to the Cure JM Foundation. Once she did, she had a realization: “I realized that I wanted to give back, help, and inspire kids with the same disease I had.” That started a long-standing devotion to Cure JM and our kids. “In 2012, I was asked to share my story and perform for a Cure JM Festival in Hilsboro, OR, where we honored Mason Smedley, who had just passed away from complications of his JM.” The year after, Lisa created the song, Perfect Day, to benefit Cure JM. In 2014, she shared her music with attendees of the National Family Conference. Years later, she continues her strong connection with Cure JM. In the last two years, she’s fundraised and performed for the Walk Strong to Cure JM events in Northern California. Lisa’s songs bubble with energy and carry messages of promise and strength. She hopes her songs inspire others. “Sharing the message with kids with JM that even though we may have this disease, while our bodies are raging war on ourselves, it doesn't mean we can't have dreams, or keep them alive. I’m so happy that the I help to inspire moms and their kids with JM and give them hope for their futures, that funds I raise go directly to research and finding a cure for JM, that I help to raise awareness for a rare disease and how passionate, committed and supportive all the Cure JM families and Board Members are. Also knowing that by putting myself out there and allowing myself to be vulnerable by sharing my story, I can be a light to Cure JM parents and their kids.” And what advice does she have for others that share the same drive to inspire? Lisa continues her inspirational work through song and writing. She just released her new memoir, A Light in the Darkness: Transcending Chronic Illness through the Power of Art and Attitude, which chronicles ten years of living with chronic illness, and just published her new video, Keep Shining, which explores her struggle with DM, disability and recovery. TWO TRIALS THAT URGENTLY NEED PARTICIPANTSAID Clinical Trial: Abatacept In Juvenile DermatomyositisThe Abatacept clinical trial at George Washington University is currently enrolling patients with Juvenile Dermatomyositis (JDM), including adults and children who are at least 7 years old. Study participants must have moderately active disease despite treatment with prednisone and at least one other medication. Travel funds and compensation is available for study participants for five study visits after screening. Talk to your doctor about this trial or print out the materials below and show them to your doctor. Your doctor can enroll you or get more information by contacting Hassan Awal at hawal@mfa.gwu.edu or call (202) 741-2389. Sodium Thiosulfate for Calcinosis TrialCurrently enrolling children or adults with JDM and DM who are over the age of seven. For more information, contact study coordinator Amanda Lynen at amanda.lynen@nih.gov or (301) 827.6736.Learn more at clinicaltrials.gov (identifier: NCT03267277) JOIN US AT A WALK NEAR YOU
Come together to support children, teens, and young adults fighting Juvenile Myositis. REGISTER HEREFind a Walk Strong® event near you:
Contact us at walks@curejm.org for more information or to get involved. UPCOMING EVENTS
Learn more or RSVP here.
Contact info@curejm.org for more information and to get involved. Do you have a story you would like to share? Contact enews@curejm.org |
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