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Bike to end Duchenne

Bike To End Duchenne is a fundraising program of Parent Project Muscular Dystrophy. PPMD’s mission is to end Duchenne. We accelerate research, raise our voices in Washington, demand optimal care for all young men, and educate the global community. Join our team and ride for those who can’t. To learn more about PPMD, visit www.parentprojectmd.org. Click […]

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Cure CMD

Congenital Muscular Dystrophies are a rare group of genetically inherited diseases causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow. A child with CMD may have various neurological or physical impairments. Some children never gain the ability to walk, while others lose the ability […]

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LAM Foundation

The LAM Foundation urgently seeks safe and effective treatments, and ultimately a cure, for lymphangioleiomyomatosis (LAM) through advocacy and the funding of promising research. We are dedicated to serving the scientific, medical and patient communities by offering information, resources and a worldwide network of hope and support. The LAM Foundation was established for the purpose […]

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Penn Scientists for Orphan Disease Research

We are a group of dedicated scientists working at the Gene Therapy Program at the University of Pennsylvania. Our mission is to find cures for rare genetic diseases. We are participating in The Million Dollar Bike Ride 2014 to help raise awareness for genetic diseases. The funds that we will raise will be evenly distributed […]

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Pitt Hopkins Pedalers

Pitt Hopkins is a rare and severe neuro-developmental disorder caused by a mutation of the TCF4 gene on the 18th chromosome. It is characterized by profound developmental delays, problems with motor coordination (ataxia) and balance, breathing abnormalities, seizures and severe intellectual disability. Most individuals with Pitt Hopkins do not develop functional speech. Pitt Hopkins is […]

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Raring to Go for CHI

What is Congenital Hyperinsulinism? Congenital Hyperinsulinism (HI) is a life-threatening genetic disorder that causes severe low blood sugar (hypoglycemia) in infants and children. For those with HI, the beta cells of the pancreas secrete too much insulin in an unregulated manner.  Excess insulin causes low blood sugar (hypoglycemia).  Prolonged or severe low blood sugar can […]

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RASopathies Network

RASopathies Network is a non-profit organization working to connect researchers and families while collaborating on treatment for the syndromes of the Ras/MAPK pathway. It is a place for families and researchers to learn and share information to improve the quality of life for those affected by a RASopathy. The RASopathies are a group of rare […]

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Spin Factor for Hemophilia

Hemophilia and vonWillebrand Disease are rare medical conditions in which the ability of the blood to clot is severely reduced, causing the sufferer to bleed spontaneously or from slight injury. The condition is caused by a hereditary lack of clotting factor. People with hemophilia or vWD are treated with replacement therapy, replacing the missing clotting […]

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Team ALD

The mission of ALD Connect is to improve health outcomes for individuals with X-linked adrenoleukodystrophy (ALD) by raising disease awareness, empowering patients, and accelerating the translation of scientific advances into better clinical care. DONATE here. Adrenoleukodystrophy, or ALD, is a deadly genetic disease that affects 1 in 17 000 people. It most severely affects boys […]

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Team Cure ML4

Mucolipidosis Type IV (ML4) is an autosomal recessive genetic disease that belongs to a category of lysosomal storage diseases marked by excessive waste accumulation within the lysosome. The disease causes severe mental retardation, with children generally reaching a maximal developmental age of 18 months in language and motor function; hypotonia (low muscle tone) with tight […]

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Team Familial Hypercholesterolemia

Homozygous familial hypercholesterolemia (HoFH) is the most severe form of the genetic disease familial hypercholesterolemia (FH). HoFH occurs when a child inherits the FH gene from both parents. It is a metabolic disorder which causes severely elevated LDL-cholesterol levels from birth and, if untreated, can lead to aggressive coronary artery disease, heart attacks, and even […]

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Team FARA

Friedreich’s ataxia (FA) – FA is a debilitating multi-system disease and the most common cause of inherited ataxia, 1 in 100 people are carriers of the FA Gene. What begins as difficulty with balance and coordination, progresses over a short period of time to a life altering loss of mobility, energy, speech and hearing, robbing […]

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Team MPS

Mucopolysaccharidosis I (MPS I)  disease is an inherited genetic disorder caused by a deficiency in an enzyme called alpha-L-iduronidase. Globally, MPS I occurs in about 1 in every 100,000 births. MPS I is a rare, autosomal recessive disease with pathologic manifestations in most organ systems and tissues. As a result of the defect in the gene encoding […]

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Team NPC

Ride in honor of and memory of all the NPC children as we Chase the Cure for Niemann Pick Type C Niemann Pick Type C is an inherited progressive and fatal neurodegenerative disorder classified as a Lysosomal storage disease. Cells are unable to receive proper instructions to recycle cholesterol and lipids resulting in a devastating […]

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Team NTSAD

Tay-Sachs, Sandhoff and GM1 are rare genetic disorders (also known as lysosomal storage disorders) that affect the central nervous system. Infants and children born with these diseases appear healthy at birth but progressively lose all motor function and typically die between five and 10 years old. The Late Onset forms of Tay-Sachs and Sandhoff diseases […]

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