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aPRIL 28, 2014

Penn-Sponsored Million Dollar Bike Ride to Raise Awareness about Rare Diseases

Over 350 Cyclists Riding to Support 15 Rare Disease Teams

PHILADELPHIA — The first annual Million Dollar Bike Ride will be held on Saturday, May 3, 2014, to support research and raise awareness about rare diseases. The Ride is organized by the Center for Orphan Disease Research and Therapy at Penn Medicine and Rare Disease Cycling.

WHERE:

Highline Park (31st and Chestnut Streets)

WHEN:

Saturday, May 3, 2014, Ride starts at 9:00am
Prime photo opportunities: Before and at start of the Ride and along the 11, 35, and 73-mile routes.

WHO:

Riders and their families, along with Jim Wilson, MD, PhD, director of Penn’s Gene Therapy Program and founder of Rare Disease Cycling, and Lee Sweeney, PhD, director of the Penn Center for Orphan Disease Research and Therapy. Interviews are available with Penn Medicine experts and race participants about the Million Dollar Bike Ride, living with a rare disease, or research advances in the fight against these illnesses.

WHAT:

The Million Dollar Bike Ride is the only cycling event to start and finish in Philadelphia, at Highline Park (31st and Chestnut Streets) on Penn’s campus. The Ride is not to benefit just one rare disease, but many. Individual cyclists are registering and raising money for their specific orphan/rare disease foundation, and funds raised to support research for a specific rare disease will be awarded with dollar-for-dollar matching funds, up to a maximum of $50,000. The inaugural Ride’s teams are:

Team Familial Hypercholesterolemia
Team Cure ML4 (Mucolipidosis Type IV)
Team ALD (Adrenoleukodystrophy)
Spin Factor for Hemophilia
Bike to End Duchenne (Duchenne Muscular Dystrophy)
LAM Foundation (Lymphangioleiomyomatosis)
Pitt Hopkins Pedalers
Raring to Go for CHI (Congenital Hyperinsulinism International)
RASopathies Network
Team NPC (Niemann Pick Type C)
Team FARA (Friedreich’s Ataxia)
Team NTSAD (Tay-Sachs, Sandhoff and GM1)
Penn Scientists for Orphan Disease Research
Team Cure CMD (Congenital Muscular Dystrophies)
Team MPS (Mucopolysaccharidoses)

Most of the teams are family members and friends of children with a rare disease -- older brothers are holding dress-down days at their high schools to raise money, baby-sitters are volunteering to ride, and moms and dads are training to cycle the 75-mile route to ultimately find better treatments for their children. One rider from North Carolina, who is living with Pitt Hopkins disease, will celebrate her 16th birthday on the day of the Ride, after training for the last three months with her mom to ride the 11-mile route.

Orphan/rare diseases represent a collection of more than 7,000 distinct disorders that each afflict fewer than 200,000 individuals. In all, over 25 million people in the United States suffer substantial morbidity and mortality from orphan diseases. Most rare diseases are genetic, and thus are present throughout the person's entire life, even if symptoms do not immediately appear. Many rare diseases start early in life, and about 30 percent of children with rare diseases will die before reaching their fifth birthday. Despite this huge number, research in most disease types has lagged far behind other major areas due to a combination of technological and funding limitations.

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Penn Medicine is one of the world's leading academic medical centers, dedicated to the related missions of medical education, biomedical research, and excellence in patient care. Penn Medicine consists of the Raymond and Ruth Perelman School of Medicine at the University of Pennsylvania (founded in 1765 as the nation's first medical school) and the University of Pennsylvania Health System, which together form a $4.3 billion enterprise.

The Perelman School of Medicine has been ranked among the top five medical schools in the United States for the past 17 years, according to U.S. News & World Report's survey of research-oriented medical schools. The School is consistently among the nation's top recipients of funding from the National Institutes of Health, with $392 million awarded in the 2013 fiscal year.

The University of Pennsylvania Health System's patient care facilities include: The Hospital of the University of Pennsylvania -- recognized as one of the nation's top "Honor Roll" hospitals by U.S. News & World Report; Penn Presbyterian Medical Center; Chester County Hospital; Penn Wissahickon Hospice; and Pennsylvania Hospital -- the nation's first hospital, founded in 1751. Additional affiliated inpatient care facilities and services throughout the Philadelphia region include Chestnut Hill Hospital and Good Shepherd Penn Partners, a partnership between Good Shepherd Rehabilitation Network and Penn Medicine.

Penn Medicine is committed to improving lives and health through a variety of community-based programs and activities. In fiscal year 2013, Penn Medicine provided $814 million to benefit our community.

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Karen Kreeger
O: 215-349-5658
C: 215-459-0544

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