We CAN for BPAN

Tuesday, September 15, 2015

Benefiting NBIA DISORDERS ASSOCIATION

We CAN for BPAN is a campaign to raise research funds for Beta-propeller Protein-Associated Neurodegeneration (BPAN). BPAN is one of 10 known Neurodegeneration with Brain Iron Accumulation (NBIA) disorders. 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 cognititive gains. Most children are described as clumsy with unsteady, staggering movements while walking. They are generally healthy, but may have other problems such as seizures 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 experience a relatively sudden onset of progressive dystonia-partinsonism and cognitive decline.

Research funding is desperately needed to help speed up finding a cure.

Here's what you can do to help those dealing with BPAN:

Bring awareness to BPAN. People need to understand the situation before they are willing to help. It's easy to share your story with a personal We CAN for BPAN page by clicking on the green fundraise button at the right of this page. Tell your story - and why the NBIA Disorders Association Research Program means so much to you and your loved one. Set your own fundraising goal, whether it is $50, $500, or $5,000+. Choose any amount and just know that every dollar makes a difference! You may want to host a picnic or hold a 5K walk or run. Share you page with friends, family, community members, and others who might want to help but are not sure how. Many of our supporters are using Facebook and Twitter.

About NBIA Disorders Association: The NBIA Disorders Association is the only patient organization in the United States dedicated to finding a cure for NBIA disorders. It is a non-profit, 501(c) (3) organization, founded in 1996 as the nation’s leader and expert in advancing awareness and research into these rare disorders. The association collaborates with sister organizations and scientists around the globe.