Million Dollar Bike Ride - NBIA Disorders Fund
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Help for those confronted with NBIA Disorders.
Fundraising goal $50,000.00
Recent donations (32 donations)
Name DescendingX Amount
Deborah Brown $25.00
Ms. Carole Chevalier $100.00
Dimitri Christo $50.00
Robyn Cuffe $120.00
Robert and Julie DeLullo
Top donors (32 donations)
BPAN Family Fundraisers $32250.00
Glad Lash, Inc. $1500.00
Leona This amount includes donations indented below $1275.00
   Cristina    $25.00
   Leona's family    $1000.00
chuck & cathy ripp $1000.00
Leona's family $1000.00
Team NBIA Disorders

Little Lia was diagnosed with BPAN at age 3. Let's help her and the others with this rare degenerative disease, and raise money for BPAN research!
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. Some 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 but it is not inherited. Most 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. Generally, the individuals are healthy, but they may exhibit other problems. Seizures are common, as are sleep disorders.
Help the children with BPAN
Lia and Madison 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 Lia and Madison and all the others with this rare disorder to find a cure for BPAN!
  • Cyclists can ride their preferred distance
  • All monies raised will go to BPAN research!
  • All cyclists get a t-shirt
  • Donations up to $50,000 will be DOUBLED by Penn Med
  • Rare Diseases impact more people than AIDS and cancer combined!
  • The ride is through scenic Philadelphia.
  • 100% of your donation is tax-deductible as allowed by law
Donation messages
Thanks to all the BPAN families who raised funds for the Million Dollar Bike Ride! You made it happen again - maxing out the $50,000 match!!! --BPAN Family Fundraisers
In Loving Memory of Michael Florio, Lia Florio's grandfather. --Ben and Chrissy Keebler
In memory of Michael Florio, Lia's grandfather --Mrs. Kristi Florio Florio
In loving memory of Michael Florio, Lia's grandfather. --Jerry and Patty Eash
From PKAN family to BPAN families. We are in this together. --Jordan
In memory of Michael Florio grandfather of Lia Florio --Bob and Irene Nussbaum
In memory of Michael Florio, Lia Florio's grandfather --Robert and Julie DeLullo
In honor of Elijah McBurney from Elijah's heroes at Berkshire Nautilus --Elijah's Heroes
Glad Lash donation in honor of World Rare Disease Day for BPAN in honor of Madison Greene. --Glad Lash, Inc.
In honor of Madison Greene. Arbonne commission. Let's find a cure for BPAN! We love you!! Love, Mommy, Daddy, Gavin & Mason. --Jennifer & Brian Greene
With love for Leona, Merima, and Ben --Leona's family
Go team, go! --Mary Ann Roser
We love you Leona --Leona
We thank NBIA for continuing to do this difficult research and for helping our children afflicted with this disease maintain a positive attitude during the research. --chuck & cathy ripp
Donation for Kyki Anastasiadis - BPAN. --Mrs. Kitsa Jordanides

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Post fundraising progress | Anne Marie Del Rossi, Director, Data Services | 215.898.3062
2929 Walnut Street, Suite 300 Philadelphia, PA 19104 | Superuser