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Million Dollar Bike Ride - RASopathies
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Fundraising goal $500.00
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Miles for Morgan

Meet Morgan
Morgan is a very happy and friendly 4 year old! She enjoys preschool and playing with friends. One of her favorite things to do is play after class in the midst of a big pine tree with her preschool friends. She attends an inclusive preschool program that incorporates her speech, physical and occupational therapy into her preschool routine. Her favorite characters are Paw Patrol, Frozen and other princess characters.
Morgan's journey with Noonan Syndrome began at birth, but didn't have a name until she was almost 9 months old. Diagnosed with failure to thrive in her first month, by the end of her second month it was determined that she had a rare congenital heart defect and a genetic syndrome was suspected. After ruling out a variety of other genetic syndromes and just a few weeks after her open heart surgery, her geneticist announced "I'm thinking Noonan Syndrome". It would take another couple months for the results to confirm this diagnosis. A little more than three years later, Morgan is a thriving 4 year old. Averaging approximately a dozen or so specialists and diagnoses, she lives each day to the fullest!
100% of the donation is tax deductible

100% of the donations go directly to a RASopathies research grant

Penn will match what we raise up to $50,000

The RASopathies are a group of rare genetic conditions caused by mutations in genes of the Ras-MAPK pathway. Abnormalities of this pathway have profound effects on development and can cause one of several different syndromes, including: Cardio-Facio-Cutaneous (CFC), Costello, Legius, Nerofibromatosis type 1 (NF1), Noonan, and Noonan with Multiple Lentigines (formerly called LEOPARD syndrome). These syndromes share many clinical features in common with one another, such as distinct facial features, developmental delays, cardiac defects, growth delays, neurologic issues, and gastrointestinal difficulties. While these individual syndromes are rare, as a group, the RASopathies are among the most common genetic conditions in the world. To learn more go to http://rasopathiesnet.org

https://www.youtube.com/watch?v=fbBQ6Vefbtk#t=17
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    delrossi@upenn.edu | Anne Marie Del Rossi, Director, Data Services | 215.898.3062
    2929 Walnut Street, Suite 300 Philadelphia, PA 19104 | Superuser