The Cure IBM Blog
The Million Dollar Bike Ride Needs YOUR Help!
Due to the coronavirus pandemic, Team Cure IBM will not be able to ride our bikes in Philadelphia this summer. However, although the University of Pennsylvania, the sponsor of the Million Dollar Bike Ride (MDBR), has cancelled the ride, the MDBR will still continue as...
Orphazyme Update Regarding Arimoclomol Clinical Trial During Coronavirus Pandemic
Thomas Blaettler, MD, the Chief Medical Office of Orphazyme, has released a statement to the global community regarding the status of the ongoing arimoclomol clinical trials during the coronavirus (COVID-19) pandemic. Arimoclomol is currently being studied for...
Caution Regarding the Use of Chloroquine to Treat Coronavirus in Myositis Patients
The following is a message written by Tom Lloyd, MD, a myositis specialist at the Johns Hopkins Medical Center. Can Chloroquine Cure Coronavirus? Not so fast… In a press conference today, President Trump discussed what the FDA was doing to accelerate approval of...
AAVogen Seeks Investment Funding for Development of New Therapy to Treat Inclusion Body Myositis
AAVogen, an early-stage biotech company, is developing a new treatment for inclusion body myositis (IBM). AVGN7 is a novel gene therapy treatment that is designed to treat IBM and other muscle wasting conditions. AAVogen has raised $2.3 million to date, mostly from...
$102,340 Grant Awarded for Inclusion Body Myositis Research
The 2019 Million Dollar Bike Ride grant of $102,340 for inclusion body myositis (IBM) research has been awarded to Dr. Steven A. Greenberg of Brigham and Women’s Hospital and Harvard Medical School. Dr. Greenberg will study, “Development of a Chemokine Targeted...
New Research Regarding Hand Function in Inclusion Body Myositis
A recently published study finds that the Inclusion Body Myositis Functional Rating Scale (IBMFRS) does not correlate as well as expected with measures of grip strength and finger flexor strength. This suggests that the IBMFRS could be improved to more accurately...
Arimoclomol Receives FDA Fast Track Designation for Inclusion Body Myositis
Arimoclomol, an investigational drug currently in a Phase 2/3 trial for inclusion body myositis (IBM), has received Fast Track designation from the FDA for treatment of this disabling muscle disease. This designation is designed to shorten the time needed for the FDA...
Coach Randy Marks Thrives Despite Inclusion Body Myositis
Hall of Fame Night Randy Marks, who coached Villanova’s lacrosse team for 24 years, had the enormous pleasure of introducing his son, Brian, as he was inducted into the Villanova Athletics Hall of Fame last February. A former star athlete himself, Coach Marks was...
Team Cure IBM is Ready to Ride in Philadelphia
Our team of 30 bike riders will be cycling on June 8 in the Million Dollar Bike Ride, an annual rare disease fundraising event sponsored by the Orphan Disease Center at the University of Pennsylvania. This year, for the first time, we have a team representing...
Yale Seeks Inclusion Body Myositis Patients for Electrical Impedance Myography Study
Researchers at the Yale School of Medicine in New Haven, CT are looking for patients with inclusion body myositis (IBM) to participate in a study using Electrical Impedance Myography (EIM). The purpose of the study is to learn if EIM is useful for measuring the...
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