$102,430 Grant Awarded for Inclusion Body Myositis Research


The 2019 Million Dollar Bike Ride grant for inclusion body myositis (IBM) research has been awarded to Dr. Steven Greenberg of Brigham and Women’s Hospital and Harvard Medical School. Dr. Greenberg will study “Development of a Chemokine Targeted Therapy for Inclusion Body Myositis.” Dr. Greenberg is a neuromuscular specialist with a longstanding interest in IBM.

Inclusion body myositis is a rare muscle disease that causes gradually worsening muscle weakness, often leading to severe disability. Frequent early symptoms are weak hand grip, causing trouble with tasks such as opening jars and ziplock bags, and weak legs, which results in falls and trouble standing up from low chairs. Eventually most patients need to use a wheelchair, and some lose nearly all ability to move. The cause is not known and there is no effective treatment.

The money for the research grant was raised by Team Cure IBM, a group of individuals who banded together to fight for recognition and research of inclusion body myositis. Last June, thirty people rode for IBM in the Million Dollar Bike Ride, an annual rare disease fundraising event sponsored by the Orphan Disease Center at the Perelman School of Medicine at the University of Pennsylvania (Penn). Volunteer fundraisers received contributions from over 400 donors. Orphazyme, the Danish biopharmaceutical company, generously agreed to help sponsor the team. The Myositis Association and Myositis Support and Understanding also supported the cause. The team was organized by Cure IBM, a non-profit organization dedicated to inclusion body myositis.

It was truly a team effort, and this research grant demonstrates what can be achieved when people work together for IBM.

Based on this success, Penn has invited Team Cure IBM back to ride again in the 2020 Million Dollar Bike Ride. Today the team is starting its campaign to recruit new riders, fundraisers, and donors for the 2020 Million Dollar Bike Ride, which will take place on Saturday, June 13 in Philadelphia.

Riders have a choice of 3 courses: 13, 34, or 72 miles.

Fundraisers can register as virtual riders and help the cause even if they cannot ride or come to Philadelphia.

Donations are made to Penn, which temporarily holds the money before distributing 100% of the funds in a research grant. Amounts raised between $20-30,000 will be doubled by the Orphan Disease Center at the Perelman School of Medicine at the University of Pennsylvania.

Donations for the 2020 ride can be made here: https://givingpages.upenn.edu/TeamCureIBM

Riders can register for Team Cure IBM here: https://www.milliondollarbikeride.org/registration

Contact Cure IBM at info@cureibm.org for questions about Team Cure IBM and registration.

In the past six years, the Million Dollar Bike Ride has funded over $10 million dollars in research for more than 30 rare diseases. https://www.milliondollarbikeride.org/

For more information about inclusion body myositis, please visit the Cure IBM website, https://cureibm.org/.

Cure IBM, headquartered in Davis, CA, is a nonprofit organization dedicated to inclusion body myositis education, awareness, and research.

Website: https://cureibm.org/

Email: info@cureibm.org

Contact:

Kevin Dooley, MD

Chairman, Cure IBM

info@cureibm.org

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