Million Dollar Bike Ride-SETBP1 Disorder Fund
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Fundraising goal $40,000.00
Recent donations (72 donations)
Name DescendingX Amount
Collecte de fonds d'anniversaire de Richard pour SETBP1 Society
Noonan Family MDBR Fundraiser $550.00
Barcelo-Fiquet Friend FB Fundraiser $12.00
Noonan Family MDBR Fundraiser $200.00
Noonan Fundraiser Company Matching $8655.00
Tim's MDBR Fundraiser $350.00
Collecte de fonds d'anniversaire de Richard pour SETBP1 Society $268.00
Barcelo-Fiquet Friend FB Fundraiser $170.00
Haley Facebook MDBR Fundraiser $410.00
Mirthe Givingpage Fundraiser $18.00
Wentz Family Fundraiser $125.00
Noonan Family MDBR Fundraiser $5170.00
Chance MDBR Fundraiser $250.00
Barcelo-Fiquet GivingPage Fundraiser $438.00
Eric MDBR Birthday FB Fundraiser $296.00
Mirthe Givingpage Fundraiser $63.00
Tim's MDBR Fundraiser $100.00
Noonan Family MDBR Fundraiser $2200.00
Barcelo-Fiquet Friend FB Fundraiser $80.00
Susan Graham $100.00
Erin's MDBR Fundraiser $500.00
Noonan Family MDBR Fundraiser $4200.00
MDBR Registration Fees $785.00
Mirthe Givingpage Fundraiser $52.00
Noonan Family MDBR Fundraiser $2150.00
Nancy Isham Givingpage Fundraiser $300.00
Barcelo-Fiquet GivingPage Fundraiser $50.00
Noonan Family MDBR Fundraiser $2250.00
Barcelo-Fiquet GivingPage Fundraiser $170.00
Mirthe Givingpage Fundraiser $49.00
Noonan Family MDBR Fundraiser $3375.00
Erin's MDBR Fundraiser $5000.00
Collecte de fonds d'anniversaire de Richard pour SETBP1 Society $228.00
Eric Facebook MDBR Fundraiser $120.00
Haley Facebook MDBR Fundraiser $540.00
Mirthe Givingpage Fundraiser $293.00
Jundeann Givingpage Fundraiser $2500.00
Barcelo-Fiquet GivingPage Fundraiser $465.00
Tim's MDBR Fundraiser $540.00
Jundeann Givingpage Fundraiser $2500.00
Riding for Poppy Fundraiser $100.00
Nancy Isham Givingpage Fundraiser $50.00
Barcelo-Fiquet GivingPage Fundraiser $50.00
Marsha and Ray Floyd $5000.00
Tim's MDBR Fundraiser $760.00
Wentz Family Fundraiser $50.00
Tim's MDBR Fundraiser $750.00
Dima, Arina and Joćo $100.00
Tim's MDBR Fundraiser $150.00
Nancy Isham $200.00
Barcelo-Fiquet GivingPage Fundraiser $575.00
Kirk Chen $25.00
Riding for Poppy Fundraiser $180.00
Tim's MDBR Fundraiser $200.00
Wentz Family Fundraiser $325.00
Barcelo-Fiquet GivingPage Fundraiser $25.00
Mr. PETER CERVI $50.00
Alexis McDonald GivingPage Fundraiser $150.00
Keeling Family $500.00
Helene and Tommy Annas $50.00
Tim's MDBR Fundraiser $200.00
Riding for Poppy Fundraiser $390.00
Eric MDBR Birthday FB Fundraiser $954.00
Alexis McDonald GivingPage Fundraiser $735.00
Mirthe Rosink $100.00
Nikki Duffy Family Donation $20.00
Barcelo-Fiquet GivingPage Fundraiser $100.00
Barcelo-Fiquet GivingPage Fundraiser $140.00
Oyler Family Donation $100.00
Haley Oyler MDBR Birthday Facebook Fundraiser $1036.00
Recent donations
Top donors (72 donations)
Noonan Fundraiser Company Matching $8655.00
Noonan Family MDBR Fundraiser $5170.00
Marsha and Ray Floyd $5000.00
Erin's MDBR Fundraiser $5000.00
Noonan Family MDBR Fundraiser $4200.00
Noonan Family MDBR Fundraiser $3375.00
Jundeann Givingpage Fundraiser $2500.00
Jundeann Givingpage Fundraiser $2500.00
Noonan Family MDBR Fundraiser $2250.00
SETBP1Strong Team - Million Dollar Bike Ride

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

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 $60K for research, which would give us $90K with matching!

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

SETBP1-HD 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-HD. We are focusing all funds raised in the Million Dollar Bike Ride for SETBP1-HD to benefit research focused on identifying underlying disease mechanisms or pre-clinical development of potential therapies or tools.

Learn more about the SETBP1Strong Team and Million Dollar Bike Ride at www.setbp1.org/MDBR

SETBP1 Society's mission is to provide support to individuals with SETBP1-HD 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
SETBP1 Society Instagram: www.instagram.com/setbp1
SETBP1 Society LinkedIn: linkedin.com/company/setbp1-society/
How can I join the SETBP1Strong Team?
Visit https://www.milliondollarbikeride.org/registration 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!


RIDE DETAILS

WHEN: Saturday, June 11th
WHERE: Philadelphia, PA

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

OUR SETBP1STRONG TEAM included some amazing people riding to advance SETBP1 disorder research in the past years! 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 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

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

TEAM ANTOINE - CREATED BY Jean-Francois Barcelo & Elisabeth Fiquet : I am cycling for scientific research on SETBP1!
http://givingpages.upenn.edu/Antoine

TEAM AOIFE - CREATED BY Tim. I am cycling for my daughter.
http://givingpages.upenn.edu/ridingforaoife

Corey Cruisers - CREATED BY Noonan Family: We are cycling for our child with SETBP1!
http://givingpages.upenn.edu/coreyscruisers

Team Geye - CREATED BY Trina Geye: I am cycling for kids with SETBP1 disorder!
http://givingpages.upenn.edu/Trina

Team Nana - CREATED BY Nancy Isham: I am riding for my grandson with SETBP1 disorder!
http://givingpages.upenn.edu/forCole
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/2021/03/HowtocreateyourSETBP1StrongfundraisingpageMDBR2021.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 200 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
Tim's MDBR Fundraiser --Tim's MDBR Fundraiser
Mirthe Givingpage Fundraiser --Mirthe Givingpage Fundraiser
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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