Tuesday, September 15, 2015


“Unless someone like you cares a whole awful lot, nothing is going to get better. It's not.” Dr. Seuss

Hi, Everybody, I am PAN and I need your help to find treatments, and ultimately, a cure for some very special friends of mine who have a genetic disease called BPAN.

We are on the right track, thanks to a grant from the NBIA Disorders Association. That money led scientists in Munich, Germany, to find a gene that makes children sick with BPAN, which stands for Beta-propeller Protein-Associated Neurodegeneration. It’s a mouthful, and it does terrible things to the body, such as cause developmental delays, seizures and unsteady movements in childhood.  It gets worse over time, resulting in premature death.

Now we need you!

These scientists are creating a mouse model for BPAN, the next critical step in our path to a cure. The association has raised $27,760, but we urgently need $40,000 more to zoom ahead with this project.  

Here’s what you can do to help us:

From June 15  to Sept. 1, help bring awareness to BPAN so we can fund this potentially life-saving research.It’s easy. Just create a personal We CAN for BPAN page by clicking on the Green Fundraise button at the top of this page. Share your story and say why NBIA Disorders Association Research Program means so much to you and your family. Set your own fundraising goal, whether it is $40, $400 or $4,000. Choose any amount and just know: Every dollar makes a difference!

We CAN for BPAN is a meaningful way for you to reach out to friends, family, co-workers and businesses who want to help but aren’t sure how. And don’t forget to promote your FirstGiving page on Facebook and Twitter.

Don’t want to set up a page? How about hosting a picnic or 5K run to raise funds? 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 pals or create their own page to raise awareness. Or they can donate directly to this campaign by sending them this link:https://www.firstgiving.com/NBIAdisorders/We-CAN-for-BPAN and clicking on DONATE at the top of this page.

We CAN for BPAN  is about what works best for you to help.

Please help me help my little friends. The faster we do this, the faster the research can begin. So don’t wait to get started. We CAN for BPAN runs for just two months. Together, We CAN. I am counting on you!

“It’s not about what it is, it’s about what it can become.” Dr. Seuss

Thank you for your support!


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.