The NBIA Board of Trustees has selected a former consultant in nonprofit management with longtime experience managing fundraising campaigns as its new development director. The board unanimously selected Marsha Bryan of San Marcos, Calif., to direct all the organization’s fundraising activities. She will be responsible for cultivating donors, applying for grants, facilitating planned giving, managing annual donor recognition programs and assisting families with fundraising efforts, among other duties. ...More
Researchers interested in applying for a grant from NBIA Disorders Association have until April 1, 2015 to submit their application.
Grants will be for one year and up to $45,000 with funding to begin June 30, 2015. Proposals to develop models will be considered for multi-year funding with budget justification. Please see our grant application for more details: ...Grants Program Information
Dr. Susan Hayflick of Oregon Health & Science University has been awarded $45,000 by our organization for her grant titled, “Examining the role of ischemia in the neurodegenerative disease PKAN.” The one year grant period began on December 15, 2014. Her group will be using the research grant to investigate a connection between PKAN and stroke. They intend to use the results from these studies as preliminary data for a larger NIH Research Grant application. A link between PKAN and stroke would suggest new approaches to therapeutics that may be effective in treating the underlying mechanisms that lead to disease progression.
Our Eighth International NBIA Disorders Association Family Conference will be held May 28-31, 2015. Site of the conference is the Embassy Suites Minneapolis North in Brooklyn Center, Minn.
The hotel is approximately 7 miles from downtown Minneapolis. Room rates are $114 for up to 2 people and $10 for each additional person. ...More
It's Back! Mike Cohn's Nashville Guitar Drawing to Support the NBIA Disorders Association!
Drawing will be held at the Eighth International NBIA Disorders Association Family Conference in Minneapolis, MN - you do not need to be present to win! Over 30 music artists have signed the guitar, including major artists Hunter Hayes, Randy Houser, Parmalee, Thompson Square, Thousand Horses and more! ...More
The NBIA Family Survey results are in, and they show that nearly 90 percent of you agree or strongly agree that the information in our newsletters and on our website is helpful. The survey results already are providing the NBIA Disorders Association with important information on how to best serve our NBIA individuals and families. We received responses from 78 families and individuals from Sept. 1 to Oct. 10. ....More
NBIA Disorders Canada has joined the NBIA Alliance. They are a newly formed group, led by Michelle Sheppard-Whalen. Michelle’s son Landon was diagnosed with FAHN in spring, 2014. They are reaching out to other Canadian NBIA families to connect and work together to increase research and awareness in Canada. Contact email is email@example.com. They hope to have a website soon.
ENACH Asociation, the NBIA organization in Spain, is working with Dr. Belén Pérez-Dueñas, a researcher with The Centre for Biomedical Network Research on Rare Diseases (CIBERER) Unit 703 at the Sant Joan de Déu Hospital in Barcelona. She is leading a project titled “Clinical evaluation and genetic characterization of Neurodegeneration with Brain Iron Accumulation disorders to be funded by TV3 Marathon in Spain. ...More
The international NBIA umbrella patient organization NBIA Alliance announces the award recipients of the travel grants to participate in the 3rd Joint Symposium on Neuroacanthocytosis (NA) and Neurodegeneration with Brain Iron Accumulation (NBIA), held in Stresa, Italy, from October 30th to November 1st, 2014. ...More