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Million Dollar Bike Ride - Pitt Hopkins
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https://www.youtube.com/watch?feature=player_embedded&v=93hQmzXXNQU
   
Fundraising goal $5,000.00
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Pedal for Pitt Hopkins - Team Adalyn

Adalyns story
At 6 months, we knew something was not quite right. She wasn't hitting any of her developmental milestones. She was tested for several different things. Adalyn was diagnosed with Pitt Hopkins Syndrome on April 2nd, 2013.

Adalyn learned to walk independly at 3 1/2 years old! That was a HUGE accomplishment for her, as we were told from early on that she may never be able to walk on her own. Although she can not talk, she is getting very good at sign language. She has about 20 signs she is able to use to let us know her needs.

Her favorite thing to do (besides playing with her big brother Austin) is swimming!
What is Pitt Hopkins Syndrome?
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, intellectual disability and possible seizures. Most individuals with Pitt Hopkins do not develop functional speech. Pitt Hopkins affects all races and both genders equally.

Since the gene that causes Pitt Hopkins was only found in 2007, currently there are less than 300 children in the world diagnosed with this syndrome, however we believe there are many more. Because loss of TCF4 prevents neurons from functioning properly, our scientist believe that studying Pitt Hopkins will also give us important insight into other neurological disorders like Alzheimers, Autism and Epilepsy.

For more information on Pitt Hopkins please visit www.pitthopkins.org
What is the Pitt Hopkins Research Foundation and why is THIS ride so important to us?
The mission of the Pitt Hopkins Research Foundation (PHRF) is to support research dedicated to finding a treatment, and hopefully an eventual cure of Pitt Hopkins and other similar disorders. Made up of families for families, the PHRF is also dedicated to supporting children with Pitt Hopkins with resource recommendations, parental support and the latest medical information. With cutting edge research, we HOPE for a brighter future for our children and children with similar disorders.

For this ride, every dollar raised for Pitt Hopkins (up to $50,000) will be doubled and 100% of the donation will go to research.
Info on the race
RIDE DETAILS:
Saturday, May 3rd
9:00am start
Start/Finish Line - Highline Park, 3160 Chestnut Street, Philadelphia, PA
Three route options - 11, 34, or 73 miles -- see routes here http://www.milliondollarbikeride.org/ride-routes/
Jersey, refreshments, and entertainment included!

Team registration is open; contact wilsonjm@mail.med.upenn.edu

Individual cyclist registration is open: http://www.pennmedicine.org/milliondollarbikeride

Volunteer registration is open: www.pennmedicine.org/milliondollarbikeridevolunteer

The Penn Medicine Center for Orphan Disease Research and Therapy (CODRT) is sponsoring this race to raise money for research in rare diseases such as Pitt Hopkins, and they will MATCH EVERY DOLLAR DONATED!! (up to $50,000) Please consider donating to our cause and being a part of transformative research. 100% of your donation will go towards research!



Less than 300 diagnosed world wide
Rare diseases impact more people than aids and cancer combined

Give some amazing children and families hope
100% of your donation will be doubled by CODRT
100% of your donation is tax-deductible
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    lagarry@upenn.edu | Leigh Anne Garry, Director of Business Process Integration and Technology Training | 215.746.8840
    2929 Walnut Street, Suite 300 Philadelphia, PA 19104 | Superuser