New campaign for BPAN research exceeds goal by 37.5%!

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

Say hello to PAN, the newest member of our NBIA family.

Pan helped his friends Dylan Dyer, Anna Kadamus and the many children in our BPAN group to raise funds in search of a cure. Together, with many help from our generous donors they did an amazing job.

The We CAN for BPAN Campaign, featuring our mascot PAN, with a goal of $40,000 began on June 15, and ended on September 30. Total amount raised to date for the campaign was $ 54,610.  Thanks to the support of nine fundraisers and over 375 donors, the NBIA Disorders Association is now able to fund a two-year mouse model project for BPAN for $67,760.

Dylan’s parents, Meg and Matt Dyer, and Anna’s parents, Katie and Ben Kadamus, attended the Eighth International NBIA Disorders Association Family Conference at the end of May. There, they learned about the mouse model, a critical step on the path to a cure for BPAN. The association had raised $27,760, but needed $40,000 more to zoom ahead with this project.  Both families were motivated to lead the effort to raise these funds, and started the campaign ball rolling just two weeks after returning from the conference.

Scientists can now start work on the mouse model in the fall. All funds raised over the $40,000 for this grant will go toward funding more BPAN research in the future.  

Miet Neetesonne, who lives in Belgium and whose son Lasse has BPAN, has been fundraising for the campaign and said, ”It's really great what we can achieve when we work together.” She also was grateful for the outpouring of support she received. “It's really heartwarming to see how people I often don't even know are helping out for the BPAN campaign in Belgium,” she said.

Successes like this can’t happen without the support of friends like you.  There is still time to add to the success of this campaign. Send your check to NBIA Disorders Association, 2082 Monaco Ct., El Cajon, CA 92019. Please indicate We CAN for BPAN on the memo line.

For more information, contact Info@NBIAdisorders.org for assistance.

Click on any of the thumbnail images to view the photos in a larger size.

Together for Tomorrow: An NBIA Disorders Association Action Initiative

The NBIA Disorders Association has been a leader in the fight to find a cure for NBIA since 1996. We have awarded over $1.3 million to finance critical research and our many programs support families who NBIA touches. Still, we have much work to do to find a cure for NBIA.

Together for Tomorrow is an easy, low-pressure, meaningful way for you — or anyone who wants to get involved to reach out to friends and family to join us in the fight!

From Nov. 1, 2014 to Feb. 28, 2015, we are asking you to bring awareness to NBIA disorders, and help us raise $200,000 to support our family outreach programs and potentially life-saving research.

Through a personal Together for Tomorrow page on FirstGiving, you can share your story and tell why the NBIA Disorders Association means so much to you. Set your own fundraising goal, whether it is $50 or $50,000. Every dollar makes a difference!

Getting started is easy, and you can choose how you want to reach your goal. Want to host a bowling night for friends? Great. Only have time to send an email or two to family? No problem. Prefer to promote your page on Facebook or Twitter? Super. Together for Tomorrow is about what works best for you, and is a way for everyone — not just NBIA families — to help support NBIA Disorders Association. Feel free to encourage your friends and family to create their own page!

Anyone who fundraises $250 or more will receive an official NBIA Disorders Association T-shirt. Those who fundraise $5,000 or more will receive special recognition at our Eighth International NBIA Disorders Association Family Conference in May 2015. And don’t forget to keep checking this web page and your email for special prizes along the way.

Together we can ensure a brighter future for Tomorrow.

Thank you for your time and commitment to making
Together for Tomorrow: An NBIA Action Initiative
a huge success!