NBIA Disorders Association is participating in the Million Dollar Bike Ride for the fourth year and hopes to once again raise the maximum amount of $30,000 that will be matched by the University of Pennsylvania’s Orphan Disease Center. This will enable a $60,000 grant for BPAN research. We must raise of minimum of $20,000 to qualify for matching funds.
This year’s ride will be virtual so anyone can participate! You can log miles riding in your neighborhood (safely and socially distancing) or on a stationary bike in your home. If you can’t ride but wish to support TEAM NBIA DISORDERS you can DONATE HERE or to any TEAM NBIA DISORDERS cyclist’s fundraising page.
100% of registration dollars and fundraising goes towards our BPAN research grant.
REGISTER TO RIDE
You can REGISTER TO RIDE for either $25 if you commit to raise $250 by June 13, or $45 if simply wanting to be a cyclist.
When registering you will be asked to identify the disease you wish your registration fees to go to and you should pick Neurodegeneration with Brain Iron Accumulation from the list.
If you are registering to fundraise you will be asked to create your individual fundraising page using Penn GivingPages and all funds raised will go to NBIA Disorders Association for the match. You will be given an unique URL that you can send to friends and family to ask them to give at your fundraising page.
Here's a guide on how to create a Penn Giving Page: VIEW GUIDE
Why We Ride: The Floria Family - BPAN
This is Lia, our happy, friendly little girl. Although you can’t tell from her picture, she was diagnosed in January 2017 with an ultra-rare neurodegenerative disease called BPAN (Beta-Propeller Protein Associated Neurodegeneration). Our world was turned upside down the day we got this devastating diagnosis. It’s been three years, and we have adapted to our new normal. We live a very happy life, despite the challenges and uncertain future we face with Lia’s disorder.
BPAN, which mostly affects females because the gene, WDR45, is on the X chromosome, causes a cascade of severe physical and development problems. The mutation is often lethal in males before they are born.
Individuals with BPAN are developmentally delayed with slow motor and cognitive abilities. Typically, they are unable to speak and develop little to no words. Seizures and sleep disorders are common. During adolescence or adulthood, affected individuals experience a relatively sudden onset of progressive and painful movement problems called dystonia-parkinsonism. They also experience cognitive decline and cannot regain skills once lost.
Advancements in medical care have extended the life span of many individuals with BPAN, enabling some affected individuals to live well into middle age. But having BPAN also means being in a race against time.
The disorder was only discovered in 2012 and has no treatments or cure. Doctors and researchers are trying to understand more about the disorder so they can develop effective therapies. The work consumes time and money.
Lia gives us the energy and strength to fight for her every day. For the third year, we will take part in the University of Pennsylvania’s Million Dollar Bike Ride to win (again, we hope) a $30,000 matching grant for BPAN research. Please consider donating to the NBIA Disorders Association to help us raise our share of the match. With your help, someday we will have a treatment to help our little girl and all of the other kids living with BPAN.DONATE HERE