Special supplement to January 24 issue of Neurology taps creative and scientific minds from all over the globe to try to solve inclusion-body myositis, the most common muscle disease of the elderly.
R&B Legend Archie Bell, remembered most for his 60's chart-topper "Tighten Up," headlines Los Angeles benefit April 14 for The Myositis Association. His brother, USC football great Ricky Bell, died at 29 of dermatomyositis, a rare muscle disease.
Sick child who shares name with fictional character in Akeelah and the Bee will join the stars at the movie's premiere April 20.
Actor and model Fabio is lending support to patients with rare muscle disease who want more public funding for research because of a close family friend who has the disease. Myositis Awareness Day is Sept. 21 and will begin nationally with an appearance before congressional committee members.
With the help of myositis experts, members of congress, patients, families and international celebrity Fabio, The Myositis Association successfully petitioned Congress to designate a day of advocacy for this rare autoimmune disease. See Fabio's presentation about myositis available on video (embedded).
Amid growing awareness of the problems facing patients with autoimmune disease, people with myositis have a new clinical center and attention from national media.
Rare disease often defies diagnosis, but The Myositis Association, now in its 15th year, is working for faster diagnoses, more effective treatment, patient education and support.
Questcor Pharmaceuticals funds national and international activities designed to publicize myositis, a rare, chronic neuromuscular disease.
Pharmaceutical company and non-profit to collaborate on development of new approach to treatment of rare diseases polymyositis and dermatomyositis.
Funding for physician and patient education materials and activities funded by grant from Autoimmune and Rare Diseases business of Mallinckrodt Pharmaceuticals.
Wrestling coach Mike Powell drew national attention as the force behind the Oak Park and River High School wrestling program that took students from the street to the mat and won multiple championships. Coach Powell, himself a wrestling champion and graduate of the Chicago-area school, went on to become an All-American at Indiana. In 2009, on the heels of a winning season, Powell was diagnosed with myositis, a rare muscle disease. ESPN and Sports Illustrated have documented his story. Powell will share the next chapter in Orlando, Sept. 10. Shortly after Powell speaks, the San Francisco Giants honor Mike Krukow, former Giant and now their veteran color commentator who has also been diagnosed with myositis.
Former star and current San Francisco Giants announcer Mike Krukow honored at home plate before Diamondbacks game to draw attention to his rare disease.
Former star and current San Francisco Giants announcer Mike Krukow honored at home plate before Diamondbacks game to draw attention to his rare disease.
Trial to confirm safety and efficacy of new drug for rare disease.
Myositis is a rare, autoimmune disease affecting 50,000 people in the U.S. Average time to diagnosis is more than three years and five doctors' visits. Advocates hope that better information will avoid this costly and potentially fatal delay.
Myositis Mystique races at Delaware Park this afternoon.
The Myositis Association (TMA) hosts its 2016 Annual Patient Conference September 1-4 at the Hilton New Orleans Riverside. The conference aims to raise awareness of myositis, a rare autoimmune disease of the muscles, to educate patients about how best to manage symptoms and to provide patients and caregivers with a supportive community.
Recruitment is underway at 25 sites around the world for 36 volunteers to participate in a randomized, double-blind, placebo-controlled, Phase 2 clinical trial of an investigational medicine called IMO-8400 for dermatomyositis (DM).
Since the inception of its research funding program in 2002, the Myositis Association has approved 50 research projects, including grants and fellowships totaling nearly $6 million.
This year, TMA offered half a million dollars in new funding for research into causes, treatments, and cures for rare myositis diseases.
May is Myositis Awareness Month, a time when The Myositis Association and its members spread the word about the challenges faced on a daily basis by the more than 50,000 Americans who live with myositis.
TMA-funded research fellow Xavier Suárez-Calvet, PhD is putting together pieces of the puzzle of dermatomyositis that may someday lead to more effective treatments for this rare autoimmune disease of the muscles.
For some patients, statins cause necrotizing myopathy, a form of the rare, chronic, debilitating condition idiopathic inflammatory myopathy, also known as myositis.
Former police officer Martin Jarry ran a 10K, even though he has inclusion body myositis, a disabling disease of the muscles.
Former police officer Martin Jarry ran a 10K, even though he has inclusion body myositis, a rare debilitating disease of the muscles.
Dan Seftick thought his biggest challenge in life was his rare disease, dermatomyositis. When his son Greg tragically died in an avalanche while hiking in Grand Tetons National Park, he discovered there can be much bigger mountains to climb.
The Myositis Association (TMA) hosts their 2017 Annual Patient Conference September 7-10 at the Sheraton San Diego Hotel and Marina. With more than 80 presentations and nearly 500 myositis patients, friends, and family members in attendance, this conference promises to be the largest in TMA history.
Recruitment is underway at 25 sites around the world for 36 volunteers to participate in a randomized, double-blind, placebo-controlled, Phase 2 clinical trial of an investigational medicine called IMO-8400 for dermatomyositis (DM).
The ability to diagnose myositis diseases and treat them properly just improved immensely with the publication of new, evidence-based classification criteria.
Myositis Awareness Month brings attention to a rare autoimmune disease of the muscle that can cause disability for children and adults.
The Myositis Association announces the launch of its newly redesigned website, making it easier for visitors to access evidence-based information about all forms of the rare autoimmune muscle disease known as “myositis.”
The Myositis Association is pleased to announce the appointment of Mary McGowan as Executive Director.
TMA hosts its Annual Patient Conference at the Louisville Marriott Downtown on September 6-9. With more than 500 myositis patients and family members in attendance, this conference promises to be the largest in TMA history.
TMA is pleased to announce they have awarded three new myositis research grants.
The Myositis Association (TMA), the leading international patient organization dedicated to improving the lives of people affected by myositis, is pleased to announce the appointment of five new members to its Board of Directors.
The Myositis Association (TMA), the leading international patient organization dedicated to improving the lives of people affected by myositis, is pleased to announce the appointment of three new members to its distinguished Medical Advisory Board.
Corbus Pharmaceuticals is now recruiting dermatomysitis patients for an exciting phase 3 clinical trial for lenabasum. The trial, known as DETERMINE, is designed to evaluate the efficacy and safety of lenabasum for the treatment of dermatomyositis.
Together with other rare disease organizations, The Myositis Association is encouraging those who live with myositis diseases to Celebrate Your Rare by speaking out about the challenges they face and the need for more research into the causes, treatments, and possible cures for these diseases.
Legendary guitarist Peter Frampton announced Saturday that he has a rare, debilitating muscle disease called inclusion body myositis.
While IBM is the most common acquired disease of the muscles in patients over the age of 50, there are several other forms of myositis that The Myositis Association (TMA) is hoping Peter Frampton’s fame will bring more awareness to.
The Myositis Association celebrated National Occupational Therapy Month in April with a conversation with Dr. Malin Regardt, an occupational therapist on TMA's Medical Advisory Board.
Awareness campaign kicking off Myositis Awareness Month aims to ensure the over 75,000 people with the disease are diagnosed and get treated
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