Million Dollar Bike Ride-SETBP1 Disorder Fund
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Fundraising goal $40,000.00
Recent donations (21 donations)
Name DescendingX Amount
Team Lueders
Ray, Louisa, Ray, Dawn, Penny, & Bella
Ray and Dawn Warner $100.00
Jim and Char Wawrzyniak $100.00
Million Dollard Bike Ride-SETBP1 Disorder Fund $50.00
E. Fiquet $20.00
Pascale Clement $100.00
Patricia Bradburn
Worldwide Yacht Sales Inc on behalf of Bill, Gina, Ashley and Haley
The Hixen's $50.00
Marsha & Ray Floyd $2500.00
Sam and Jill Comras $1000.00
Erin Otness $250.00
Ms Carmen Hicks $100.00
Diana
Ms Carmen Hicks $100.00
Ms Nancy Isham $200.00
Jean-Francois Barcelo $50.00
Mark $50.00
Anonymous $250.00
Recent donations
Top donors (21 donations)
Ray, Louisa, Ray, Dawn, Penny, & Bella
Marsha & Ray Floyd $2500.00
Worldwide Yacht Sales Inc on behalf of Bill, Gina, Ashley and Haley
Sam and Jill Comras $1000.00
Patricia Bradburn
Diana
Anonymous $250.00
Erin Otness $250.00
Ms Nancy Isham $200.00
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!

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 http://www.alumni.upenn.edu/MDBR2019 to Register and select SETBP1 Strong 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 as cyclist with fundraising will receive an official MDBR 2018 cycling jersey. If you wish to receive the jersey on event day, you must register by March 12th.


RIDE DETAILS

Sunday, May 20th
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

TEAM ANTOINE: We are cycling for our son Antoine and for scientific research on SETBP1! http://givingpages.upenn.edu/avelopourantoine

TEAM JOHN: I am riding for my son John, and for all individuals with SETBP1 Disorder. We are riding with hope for a future where treatments will become available that will lessen the challenges that our children face every day. http://givingpages.upenn.edu/TeamJohn

MORE TEAM COLE: I ride for my nephew and others impacted by SETBP1 disorder! http://givingpages.upenn.edu/ridingforcole

TEAM JOHN PARKER: I ride for my son John Parker and others impacted by SETBP1 disorder! http://givingpages.upenn.edu/teamjohnparker

TEAM SOPHIE: We ride for Sophie and all individuals with SETBP1 disorder and for their families! http://givingpages.upenn.edu/ridingforsophie

AND MORE TEAM COLE: I ride for my grandson and others impacted by SETBP1 disorder! http://givingpages.upenn.edu/forcole
How can I set up a fundraising page?
Fundraising 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

http://www.setbp1.org/wp-content/uploads/2018/01/How-to-create-your-fundraising-page-MDBR.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!
  • Only 60 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
Donation messages
The Warners: To Sophie and all. From the Great State of Ohio. Our prayers for success in this Research Mission. --Ray, Louisa, Ray, Dawn, Penny, & Bella
For Sophie --Ray and Dawn Warner
Cette donation est pour À vélo pour Antoine (Barcelo / Fiquet) et la recherche sur le gène SETBP1 --Million Dollard Bike Ride-SETBP1 Disorder Fund
Quelle bonne idée! J'aurais aimé me joindre à vous.. Bonne randonnée! --Pascale Clement
We wish you the best Sophie .... Prayers from our family Love and Hugs Bill , Gina , Ashley and Haley --Worldwide Yacht Sales Inc on behalf of Bill, Gina, Ashley and Haley
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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