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Million Dollar Bike Ride - NBIA Disorders Fund
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14-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 (13 donations)
Name DescendingX Amount
Anonymous $8602.31
Mullins Family
Auntie Mary and Uncle Paul $1000.00
The Sibbald Family
Kinsley Potter $50.00
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Recent donations
Team NBIA Disorders

Help 7-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. BPAN has a wide phenotypic spectrum, meaning that symptom presentation and severity can vary greatly among patients.
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. During adolescence or adulthood, affected individuals experience a relatively sudden onset of progressive dystonia-parkinsonism and cognitive decline. BPAN is progressive, meaning the symptoms worsen over time.

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!
  • In-Person & Virtual Riders
Donation messages
MDBR Fundraisers held by BPAN families other than Team pages --MDBR Fundraisers
For Dear Duet, with all of our love, support and prayers we hope this small donation helps in big ways. --Auntie Mary and Uncle Paul
For our dear friends daughter. We love you. --The Sibbald Family
For my daughter... --Jordyn Alcock
Thanks to all that have helped us reach $18,360 as of June 2, 2022! This amount includes all fundraising pages connected to Team NBIA Disorders. Only $12,000 more to reach our goal of $30,000!! --$18,000 anonymous donation is total of all fundraising pages as of 6-2-2022
For Samantha --Merri and Dan
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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