Research Lab

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:

Any donation of $250 or greater may still be designated for research purposes. Effective Oct. 1, 2015, we also will allow donations of $1,000 or more to be designated for a specific NBIA disorder.

Donations can be aggregated if a group is fundraising via our FirstGiving platform. In that way, all donations from individual pages will be added together to qualify for the $250 minimum for any research project and the $1,000 minimum for designating a specific NBIA disorder. Other fundraising platforms may be accepted if approved in advance by the board. 

When designating a specific disorder, campaigns may last up to six months. The ending date of the campaign will be used for all donations to that campaign.  For fundraisers in the community for a specific disorder and not part of a group campaign, the date of the event will be used for all donations to that fundraiser.

Donation dates are important for this reason: If after 24 months there are not enough donations to cover a research grant ($50,000 minimum, including a maximum of $5,000 in administrative costs) for a designated disorder, that money will be moved to our general research fund for work on any type of NBIA research.

If more than $50,000 has been raised for a specific disorder, the excess funds will be held for 24 months to add to other donations also designated for that disorder. If after 24 months there are not enough donations to make an additional grant, the funds may be moved to a designated research fund that benefits all NBIA disorders, such as funding a registry, natural history studies or a biobank for NBIA disorders.

The board may choose to offer a grant greater than $45,000 for any disorder if funds are available and a worthy project requiring more funding is identified.

The organization retains the right to not award a research grant for a specific disorder in a grant round if the Grant Review Committee does not identify a worthy proposal. A second grant round will be offered and every effort will be made to encourage meritorious research for the disorder.

The board acknowledges that administrative (overhead) expenses occur during the support of research activities and will charge these costs using standard accounting procedures. Administrative costs for each project over a 24-month period are limited to no more than $5,000. Actual costs will be prorated, taking into consideration the activity and time spent administering each disorder’s research fund during the 24 months. If administrative charges are less than $5,000, the amount remaining after 24 months will become part of the specific disorder’s designated research fund.

At least twice a year, the organization will make available a list of all totals designated for a specific disorder, showing the date of receipt and the amount needed to fund a research grant so that anyone interested in fundraising will know how much is needed and how much time remains to raise it.

The board may periodically change the minimum amount for a research grant.

Read the Policy