The Neurodegeneration with Brain Iron Accumulation (NBIA) Disorders released a statement announcing a new funding goal for 2013.

“Dear Friends and Families,

The Board of Directors has set an aggressive, but achievable, goal to raise $135,000 so that we can fund at least three scientific projects this year as part of our Research Grants program. For the past 20 years, working closely with our Scientific and Medical Advisory Board, we have funded over 22 research grants that have lead to promising breakthroughs, including the discoveries of NBIA genes.

We are asking that you please work along side us and consider participating in our first annual NBIA Community Fundraising and Awareness Campaign. Not only is this an opportunity to show our strength in numbers, but this is a chance for every family, every supporter and every friend of the NBIA Disorders Association to make a personal impact in the fight for a cure.

Together for Tomorrow: An NBIA Community Campaign will launch in September and run through Rare Disease Day, February 28, 2014. Individuals participating in the Community Campaign will set up their own personal fundraising and awareness pages using FirstGiving’s online peer-to peer fundraising tool and share their stories, photos, videos and even set their own personal fundraising goals.

What’s great about the Community Campaign is that anyone can sign up to participate at any time during the six-month run. It’s very simple and will only take about 15 minutes. To get a head start, individuals can follow these simple steps:

1. Join the Together for Tomorrow: An NBIA Community Campaign via FirstGiving by clicking here:

2. Wait for the announcement in September to kick off the Community Campaign. Then, send an email to your neighbors, friends, family and co-workers inviting them to your online personal fundraising page to make a secure, tax-deductible donation.

Throughout the six months, participants can expect to receive emails that will provide helpful tips and ideas to maximize fundraising and awareness efforts, sample fundraising page and email text, opportunities to win prizes, recognition for participants and general updates on the progress of the campaign.

Again, this is an aggressive goal, but if we work together, it is achievable. We need the support of our families and our friends to help the NBIA Disorders Association continue to lead the way in research, patient support and advocacy.

We look forward to working with you all throughout the campaign and appreciate your support. And as a special thank you, the first 25 individuals who set up their fundraising pages will receive a free t-shirt and some other goodies from the organization!


The NBIA Disorders Association Board of Directors

Veronica Bonfiglio, Mark Karakourtis, Susan Laupola,

Rich Leap, Mary Ann Roser, Rick Tifone,

Mary Tapke and Patricia Wood