We are always looking for volunteers to help in a variety of different areas and at various levels of involvement. The only requirement is a desire to help. If you are interested, please print out this form. Please note that Adobe™ Acrobat Reader® is needed to view and print this form. It may be downloaded free of charge.

December 2007

Do you have a special skill or know someone who does? 

At 11 years old, the NBIA Disorders Association is ready to take a big step forward. 

But it can’t do it alone. The board has seven committed board members with a wide variety of skills, but it needs more hands to accomplish what it wants to do in the near- and long-term. At a recent meeting, the board decided that it needed, first and foremost, to add board members with specific skills and to add volunteers and new programs so it could better meet the needs of the individuals and families it serves.

The board is asking that anyone who has the talent, skills or motivation to assist in this effort, to step up to the plate. Some of you may have friends or relatives who have asked how they could help and have the time and energy to devote to this cause. Here’s a chance. 

Specifically, the board is looking for people with talents in fundraising, grant writing, organizational leadership, non-profit expertise, strategic planning and other skills that would help us move forward. 

With the right people in place, we hope to achieve the following:

• Create and finance a fellowship program that would encourage more researchers to take on our disease.
   

• Develop an outreach program that would ultimately have every person affected by NBIA on our registry.
    

• Raise enough money to hire a small paid staff. We need a full-time executive director and at least a part-time clerical assistant as soon as possible. 

So many of you have been creative at putting on fundraisers, and we urge you to keep it up and hope others will join in. We also are eager to cultivate a cadre of volunteers we can call on to help us serve families more effectively and make our organization better. Do you have some skills you’d like to share with other NBIA individuals or families? Do you know of some service we should provide that we are not providing? If so, please let us know what you’re willing to do and what we should be doing that we are not doing. 

We would like to create programs that a volunteer director would be responsible for handling and who would report to the NBIA board. Some ideas we are considering are:

• A bereavement program for families that have lost loved ones.
   

• A program to welcome newcomers with regional coordinators.
   

• A conference planning program.
   

• An education and awareness program to coordinate accurate, up-to-date information on NBIA for media, physicians and other interested parties.
   

• A community fundraising support program that would work with families wishing to hold fundraisers in their communities.
   

• A physician referral program that would generate a list of neurologists and neurosurgeons that have familiarity with NBIA to help families find a physician.             

Anyone interested in helping as a board member or the volunteer director of a program is asked to forward their resume and letter for consideration to Patty Wood at pwood@nbiadisorders.org. NBIA board members also are volunteers and are not compensated for their time. 

Thanks for your help! 

NBIA Disorders Association Board of Trustees

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