PHILADELPHIA – 400-plus riders and their families and caregivers will come together to support and raise awareness about the millions of people with rare diseases during the fourth annual
Million Dollar Bike Ride. It will be held on Saturday, May 20, 2017. The Ride is organized by the
Orphan Disease Center at Penn Medicine, and in three years has raised over $3.5 million for research.
Harriet Saxe, who is coming all the way from Portland OR for her second Ride, is co-captain of the APBD Tour de Friends. APBD has been diagnosed mainly in Ashkenazi Jews, with symptoms appearing between the ages of 30 and 60. It impacts the neurological system, and those with the condition may lose the ability to stand and walk, among many other functions. A former Philadelphia resident, Saxe’s husband Chuck, is an APBD patient, as were several others in his family.
Erin Meisner rides for her daughter Millie, a first grader with Glut 1, or Glucose Transporter Type 1 Deficiency Syndrome. Glut1 is a genetic disorder that impairs brain metabolism. The standard treatment is a ketone-rich diet to help improve most symptoms by giving the brain an alternate source of energy for growth and development. There are currently only a few hundred patients diagnosed worldwide, but Glut 1 researchers believe there are many more who are undiagnosed.
Orphan diseases represent a collection of disorders that afflict less than 200,000 individuals for any single disease type. Despite their rarity in the population, there are more than 7,000 distinct orphan diseases. In all, over 25 million people in the United States suffer from complications associated with orphan diseases; thousands die from them each year. Despite this toll, 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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WHERE:
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Highline Park (31st and Chestnut Streets)
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WHEN:
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Saturday, May 20, 2017, Ride starts at 7:30am
Prime photo opportunities: Before and at start of the Ride and along the 13, 34, and 72-mile routes.
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WHO:
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Riders and their families, along with Jim Wilson, MD, PhD, director of Penn’s Orphan Disease Center. Interviews are available with Penn Medicine experts and ride participants about the Million Dollar Bike Ride, living with a rare disease, or research advances in the fight against these illnesses. Most of the teams are family members and friends of individuals with a rare disease.
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WHAT:
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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, 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 per team. The Ride’s teams this year are:
APBD Tour de Friends (Adult Polyglucosan Body Disease)
A-T Children’s Project (Ataxia-telangiectasia)
Castleman Disease
Bike to End Duchenne
Bike 4 Sight (Retinal Blindness)
Fibrous Dysplasia Team
LAM Foundation Easy Breathers (Lymphangioleiomyomatosis)
Miles for Millie (Glut1 Deficiency)
Movin' for Mallory - Cure Cystic Fibrosis!
MPS (Mucopolysaccharidoses)
Penn Scientists for Orphan Disease Research (PSODR)
Pitt Hopkins Pedalers
Raring to Go for CHI (Congenital Hyperinsulinism International)
RASopathies Network Riders
Stop ALD (Adrenoleukodystrophy)
Team CDLK5 Riding for a Cure
Team Cure CMD(Congenital Muscular Dystrophies)
Team Cure ML4 (Mucolipidosis Type IV)
Team FARA (Friedreich’s Ataxia)
Team Josh & the DCO Riders (Dyskeratosis Congenita)
Team LGDA (Lymphangiomatosis & Gorham's Disease Alliance)
Team LMI (Lymphatic Malformation Institute)
Team NBIA Disorders (Neurodegeneration with Brain Iron Accumulation)
Team NPC (Niemann Pick Type C)
Team NTSAD (Tay-Sachs, Sandhoff and GM1)
Team Snyder-Robinson Syndrome
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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, excellence in patient care, and community service. The organization consists of the University of Pennsylvania Health System and Penn’s Raymond and Ruth Perelman School of Medicine, founded in 1765 as the nation’s first medical school.
The Perelman School of Medicine is consistently among the nation's top recipients of funding from the National Institutes of Health, with $550 million awarded in the 2022 fiscal year. Home to a proud history of “firsts” in medicine, Penn Medicine teams have pioneered discoveries and innovations that have shaped modern medicine, including recent breakthroughs such as CAR T cell therapy for cancer and the mRNA technology used in COVID-19 vaccines.
The University of Pennsylvania Health System’s patient care facilities stretch from the Susquehanna River in Pennsylvania to the New Jersey shore. These include the Hospital of the University of Pennsylvania, Penn Presbyterian Medical Center, Chester County Hospital, Lancaster General Health, Penn Medicine Princeton Health, and Pennsylvania Hospital—the nation’s first hospital, founded in 1751. Additional facilities and enterprises include Good Shepherd Penn Partners, Penn Medicine at Home, Lancaster Behavioral Health Hospital, and Princeton House Behavioral Health, among others.
Penn Medicine is an $11.1 billion enterprise powered by more than 49,000 talented faculty and staff.