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