Million Dollar Bike Ride - NBIA Disorders Fund
Donate now!
13-year-old twins Betty (l) and Audrey (r) love to sing, dance, and play music together. Betty is dedicated to raising money for Audrey and all the others who are battling BPAN.
Help for those confronted with NBIA Disorders.
Fundraising goal $30,000.00
Recent donations (12 donations)
Name DescendingX Amount
Hoffnungsbaum MDBR donors $5000.00
Ron, Donna, & Jonathan Stretter
Mr. Sandor Kapitany $300.00
Recent donations
Top donors (12 donations)
Hoffnungsbaum MDBR donors $5000.00
Ron, Donna, & Jonathan Stretter
Mr. Sandor Kapitany $300.00
For Dahlia
Team NBIA Disorders

Help 6-year-old Quinn and all the others by funding research for treatments and a cure for BPAN.
What is NBIA?
Neurodegeneration with Brain Iron Accumulation (NBIA) is a group of rare, genetic, neurological disorders diagnosed in children, affecting one to three people per million. All those with NBIA disorders deal with progressive movement challenges, most commonly involuntary muscle cramping, called dystonia. This can result in clumsiness, difficulty controlling the body, and speech problems. Most individuals eventually lose their ability to walk, talk, or chew food and become totally dependent on others. Also common is a degeneration of the retina, causing night blindness and a loss of peripheral vision.
BPAN - an NBIA disorder
Beta-propeller Protein-Associated Neurodegeneration (BPAN) is caused by genetic mutations on the X chromosome discovered in 2012. Most of those with BPAN are females. Affected individuals are developmentally delayed during childhood with slow motor and cognitive gains. Most children are described as clumsy with an ataxic gait, unsteady, staggering movements while walking. Seizures are common, as are sleep disorders.
Help the children with BPAN
Quinn and Audrey are but two of the 500 worldwide with BPAN. Their families and doctors are working hard on their behalf. We hope you can join us!
Why do we participate? To find treatments and cures for BPAN
We are working hard for Audrey and Quinn and all the others with this rare disorder to find a cure for BPAN!
  • Donations up to $30,000 will be DOUBLED by Penn Med
  • All monies raised will go to BPAN research!
  • 100% of your donation is tax-deductible as allowed by law
  • Rare Diseases impact more people than AIDS and cancer combined!
  • Virtual Ride - anyone can participate!
Donation messages
$5,000 from Hoffnungsbaum e. V. MDBR fundraisers and donations - June 29, 2021 --Hoffnungsbaum MDBR donors
$25,094.17 is the total of NBIA families MDBR fundraising pages to show our actual total raised of $25,869.17 as of 6/15/21 at 8:00 pm PDT. $4,130.83 to go!! --TEAM NBIA DISORDERS OTHER FUNDRAISING PAGES
For Dylan --Rhonda
For Dylan! Xoxo --CMills
For our Madi, and all affected by BPAN --The Bettega Family
For Samantha --Merri and Dan Mercon

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