Million Dollar Bike Ride - NBIA Disorders Fund
Donate now!
Fundraising goal $30,000.00
Recent donations (40 donations)
Name DescendingX Amount
Colleen and Allan Lukoff $18.00
Nick Raffin $50.00
Miss Madeline Perez $100.00
DeNicholas $100.00
Tsakon Family $500.00
Recent donations
Top donors (40 donations)
Nick & Helen Plias $1000.00
Grandma Vilma $1000.00
anthony kanterakis $1000.00
Event participants
Christine C Bond
Rachel Clarke
Danna Esler
Lukas Ftikas
Caroline Gangale
Event goal 100 participants

Raise Money for BPAN Research
This event is to raise research dollars to find a cure for a life threatening, genetic disorder called BPAN.

Our daughter Lexi Fae was born with this rare genetic disorder. There are only 100 children in the world diagnosed with this ultra rare disorder and there are no medications or clinical trials on the market to help these little peanuts! We need your support to raise awareness and raise funding for research. Together we can make a difference in Lexi Fae's Life!
What is BPAN?
BPAN stands for Beta-Propeller Protein-Associated Neurodegeneration. BPAN is caused by mutations in the gene WDR45 which is located on the X chromosome. The majority of the people who have BPAN are females - the mutation is lethal for most males before birth, however, there are a few males living with BPAN. People with BPAN are developmentally delayed with slow motor and cognitive gains. Typically they are also non-verbal and develop little to no words. Seizures and sleep disorders are typically common with the disorder. During adolescence or adulthood, affected individuals experience a relatively sudden onset of progressive dystonia-parkinsonism and cognitive decline and they cannot regain skills once they have lost them. The average life span varies for individuals with BPAN, but due to improvements in medical care, more affected individuals are living well into middle age.
The Future........... is Hopeful with your Support
This disorder was only discovered in 2012, and currently, there is no treatment for this disorder. There are doctors and researchers that are currently trying to understand BPAN and they need the money to keep funding their research in hopes to find a treatment or even a cure for this disease. They rely on donations from organizations, corporations, and fundraisers to keep their research going because they do not receive any US Government funding. This is why we want to raise money for BPAN Research. Thank you for your Support
Tommy is Riding!
Tommy is riding in the Million Dollar Bike Ride on June 8 2019 to raise money and awareness for BPAN! He cannot do it alone and we are counting on your for your support Please join us!
  • All money raised goes toward BPAN Research
  • Donations up to $30,000 will be matched by Penn Medicine
  • 100% of your donation is tax-deductible as allowed by law
  • Heart Disease is the Leading Cause of Death in America
  • There are more than 100 types of cancers; any part of the body can be affected.
  • Donations are accepted through June 8
  • Help us Cure BPAN
Event details
Million Dollar Bike Ride
06/08/2019 08:00 AM
Raising money for BPAN research 125 31st Street Philadelphia, PA
Donate to participate!
Donation messages
Let's find treatments and a cure for Lexi and all the others! Thanks Tommy for riding. --Colleen and Allan Lukoff
Miracles happen all the time. Tommy you are living proof even if you don't believe it. Lexi is in God's loving hands. Trust in him and lean on each other. You are a beautiful family inside and out. --Miss Madeline Perez
For Lexi and her strong, loving family. Stay Strong and Keep Hope in your heart! --DeNicholas
Bless you little Lexi! --Dr. Phyllis Marino
To Lexi Fae & Family - be brave, be strong, and keep the faith. --Alan Voy

Share this page with your friends
Post fundraising progress | Anne Marie Del Rossi, Director, Data Services | 215.898.3062
2929 Walnut Street, Suite 300 Philadelphia, PA 19104 | Superuser