We need your help to find treatments and a cure for BPAN.
BPAN is one of 10 known ultra-rare Neurodegeneration with Brain Iron Accumulation (NBIA) disorders. Beat BPAN is a campaign to raise research funds in the battle again Beta-propeller Protein-Associated Neurodegeneration (BPAN). It is caused by mutations in the WDR45 gene, located on the X chromosome.
Affected individuals are developmentally delayed during childhood, with slow motor and cognitive gains. Most are diagnosed as children, and are described as clumsy with unsteady, staggering movements while walking. Many have seizures and/or sleep disorders. Often there is a loss of brain cells and tissue in the cerebral area of the brain, a condition called generalized cerebral atrophy. During adolescence or adulthood, affected individuals often experience a relatively sudden onset of progressive cognitive decline and dystonia-parkinsonism.
Research funding is desperately needed to help speed up finding a cure.
Here’s what you can do to help us:
Help bring awareness to BPAN so we can fund potentially life-saving research. You can make a donation, knowing that every dollar makes a difference. Just click on the teal Click here to Donate Now button below. You could share your donation with your friends and family to encourage them to also donate.
If you like, create a personal fundraising page by clicking on the blue Raise money for BPAN button below. Share your story and say why this is important to you and your family. Add some photos too. Set your own fundraising goal, whether it is $40, $400 or $4,000. Choose any amount and just know: Every dollar makes a difference!
And don’t forget to promote your page on Facebook and Twitter.
Only have time to send an email or two to family and friends? No problem. Tell them you need their help. Ask them to share your message with their friends and family or create their own page to raise awareness. Or they can donate directly by clicking here.
We hope you will consider joining others to fund research for treatments and ultimately a cure for BPAN.
Please know that your contributions are tax-deductible to the full extent allowed by law because we are a charitable, 501(c)(3) organization. EIN 33-0712327
In our drive to find a cure for NBIA, we provide support to families, educate the public
and accelerate research with collaborators from around the world.
What is NBIA?
Neurodegeneration with Brain Iron Accumulation (NBIA) is a group of rare, genetic, neurological disorders. The common feature among all individuals with NBIA is iron accumulation in the brain, along with a progressive movement disorder. Symptoms vary greatly from one person to the next, partly because the gene affecting them can differ. Different mutations within a gene also can cause a more or less severe form of the disease.