The Million Dollar Bike Ride:
Help Us Raise Money for RASopathies Research
Come join us!
The University
of Pennsylvania (Penn) School of Medicine Orphan Disease Center invites you to
participate in a Philadelphia-based bicycle ride on May 9th, 2015 to raise $1
million for research in rare diseases including the RASopathies. The event is
the only cycling fundraiser to start and end in the city of Philadelphia, with
the start/finish line at Highline Park (31st and Chestnut) on Penn's campus.
There are 3 route options -- 12, 35 and 75 miles. The ride starts at 8:00am.
You must be 16 years or older to participate as a cyclist.
About the Penn Orphan Disease Center
The Penn
Orphan Disease Center was established to promote the development of therapies
across a broad range of orphan diseases. Each of these diseases by definition
is rare but collectively represents a substantial health care burden. Most
orphan diseases manifest in children with premature mortality and/or
significant disability and little is available in terms of treatments. The Penn
Orphan Disease Center has created this fundraiser to create pilot grants to
study certain rare diseases. The RASopathies have been chosen as a group to
receive a grant that will be distributed to the international science community.
100% of monies donated will go towards a grant for the RASopathies, if
you register under team RASopathies Network. 100% of the money raised under
team RASopathies Network will be matched 1:1 by Penn up to $50,000 as long as
we raise at least $20,000.
Our grant stipulations for this year:
There are numerous
anecdotal reports of individuals with a RASopathy having significant pain in
various joints and parts of the body, but this has not been formally addressed.
This yearŐs grant
will be awarded to academic researchers to initiate or advance research in
further understanding of the pertinent clinical features that impact all three
conditions (CFC, Costello syndrome (CS) and Noonan syndrome (NS)). The
research should include, but would not be limited to identifying the etiology,
incidence, assessment, and management of pain in individuals with a RASopathy.
Register to Ride with
Fundraising
Registration
is $25 and requires a minimum fundraising of $200 by May 9th. Perks will
include a professional cycling jersey and a hearty meal with local brews after.
IMPORTANT: When setting up your giving page
under Team RASopathies Network USA, please read the PDF on this link to help set up your
giving page. http://www.milliondollarbikeride.org/cyclist-registration/
Register to Ride without
Fundraising
Registration
is $60. After April 1st
it will increase to $80. Perks include a t-shirt, a hearty meal and local
brews after.
Register here and select Team RASopathies Network for the Disease
Team on the Event Information page : http://www.milliondollarbikeride.org/cyclist-registration/
To make a
donation to go towards creating a research grant for the RASopathies, please go
to http://givingpages.upenn.edu/donate/RASNET
Participate Virtually
CanŐt make it to
Philadelphia? No problem!! Create a giving page here https://socialfundraising.apps.upenn.edu/socialFundraising/jsp/fast.do?FID=840650
IMPORTANT: When setting up your giving page
under Team RASopathies Network USA, please read the PDF on this link to help set up your
giving page. http://www.milliondollarbikeride.org/cyclist-registration/
Questions? Please email Lisa Schill at LSchill@comcast.net
Thank you so much for your support
that is so greatly needed!!!