The NBIA Disorders Association is pleased to announce that it has won an award from DonorPro, a donor management and fundraising software provider.
Our organization partners with DonorPro to help us raise more money and efficiently manage our relationships with donors. We won the award for "Best Digital Fundraising Performance." We received a check for $250, a certificate and valuable consulting services and training.
September 5, 2015
Dear NBIA Community,
Do you have a skill, an area of expertise or a passion to help improve the lives of NBIA individuals and their loved ones? If so, the NBIA Disorders Association Board of Trustees wants you!
The NBIA Disorders Association Board of Trustees recently approved changes to the organization’s policy on research donations to add flexibility and to acknowledge the importance of donors being able to designate their gifts to specific disorders. Here’s a summary of the policy:
The NBIA Disorders Association board chose three projects among 19 applications to receive grants totaling $157,725 this year, enabling researchers to study three different forms of NBIA.
The grants will further research into Pantothenate Kinase-Associated Neurodegeneration, or PKAN, Mitochondrial-membrane Protein-Associated Neurodegeneration, known as MPAN, and Beta-propeller Protein-Associated Neurodegeneration, or BPAN.
Drew is a 20 year old with NBIA disorder. He is passionate about wanting people to know about rare diseases. Watch and share this inspiring video of his story.
