Million Dollar Bike Ride-SETBP1 Disorder Fund
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Fundraising goal $50,000.00
Recent donations (2 donations)
Name DescendingX Amount
Eric Oyler's MDBR Page $250.00
Haley Oyler's MDBR Page $1040.00
Recent donations
Top donors (2 donations)
Haley Oyler's MDBR Page $1040.00
Eric Oyler's MDBR Page $250.00
SETBP1 Strong Team - Million Dollar Bike Ride

Stand with us to Advance SETBP1 disorder Research
SETBP1 Society is partnering with the University of Pennsylvania Orphan Disease Center to raise funds for SETBP1 disorder. Stand Strong with us and help us advance research for SETBP1 disorder.

The Orphan Disease Center will match dollar for dollar funds all funds we raise above $20,000 and up to $30,000. 100% of the registration and donation funds will go towards SETBP1 disorder research! Our goal is to raise $50K for research, which would give us $80K with matching!

Any donation helps whether it is $10, $25, $50, $100 or $2500 - every bit counts!

SETBP1 disorder is a rare neurodevelopmental disorder affecting males and females worldwide. Individuals with this disorder are born with a loss-of-function mutation within one of the two copies of the SETBP1 gene. The one functioning copy of the SETBP1 gene does not produce a sufficient amount of SETBP1 protein for the body and brain to function normally.

There is no cure and no specific treatments for the life impacting SETBP1 disorder. We are focusing all funds raised in the Million Dollar Bike Ride for SETBP1 disorder to benefit research focused on pinpointing windows of opportunity: when in the course of SETBP1 disorder development a treatment may be effective, and what the treatment might be. Additionally, the funds should help fund research designed to further characterize SETBP1 disorder in order to better understand SETBP1 disorder.

Learn more about the SETBP1 Strong Team and Million Dollar Bike Ride at www.setbp1.org/MDBR

SETBP1 Society's mission is to provide support to individuals with SETBP1 disorder and their families, to promote discussion and fund research, and to bring awareness and education to the public.

For more information about SETBP1 Society visit:
SETBP1 Society website: www.setbp1.org
SETBP1 Society Facebook page: www.facebook.com/setbp1
SETBP1 Society Twitter: www.twitter.com/setbp1
How can I join the SETBP1 Strong Team?
Visit https://www.milliondollarbikeride.org/registration to Register and select "Million Dollar Bike Ride - SETBP1 Disorder Research" as the Team to Join!!

This is a great fundraising event as every dollar we raise is matched by UPENN's Orphan Disease Center!

NOTE: Only individuals who register with fundraising or register as a virtual rider with fundraising will receive an official MDBR 2020 cycling jersey. If you wish to receive the jersey on event day, you must register by March 27th.


RIDE DETAILS

Saturday, June 13th
7:30am start
Start / Finish Line - Highline Park | 31st St. & Chestnut
Philadelphia, Pennsylvania
Free parking, food, and activities for all.

Three route options - 13, 34, or 72 miles.
Free t-shirt, refreshments, and entertainment included!

Be the Hope! Be the Change! Be SETBP1 Strong!

OUR SETBP1 STRONG TEAM includes some amazing people riding to advance SETBP1 disorder research this year! Check out their individual pages:

RIDE FOR COLE: I'm cycling to show my support for kids like Cole and to raise much needed funds for SETBP1 disorder research. Parents, family and friends have already helped move forward 6 new SETBP1-related research projects, but there's still so much to do. http://givingpages.upenn.edu/CyclingforCole

TEAM COLE: I ride for Cole, for all individuals with SETBP1 disorder and for their families! I ride for hope! Hope for treatments that help our SETBP1 kids to not struggle every day. Hope for the future! http://givingpages.upenn.edu/Cole
How can I set up a fundraising page?
Fundraising cyclists, virtual cyclists and other supporters are encouraged to create a fundraising page. This provides the supporter the opportunity to share their story and why they have chosen to ride and/or support this cause. For directions on how to create a personalized fundraising page, please visit

https://www.setbp1.org/wp-content/uploads/2020/01/How-to-create-your-fundraising-page-MDBR-2020.pdf
Why We Need You!
The UPenn Orphan Disease Center is sponsoring this race to raise money for research in rare diseases including SETBP1 disorder. They will MATCH EVERY DOLLAR DONATED!! (up to $30,000) Please consider donating to our cause and being a part of transformative research. 100% of your donation will go towards research!
  • Less than 100 diagnosed worldwide
  • All riders will receive a t-shirt
  • Non-profit organization
  • Give some amazing children hope
  • Ran completely by volunteers
  • Rare diseases impact more people than aids and cancer combined
  • 100% of your donation is tax dedutible
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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