Organizations Filed Purposes:
IN OUR DRIVE TO FIND A CURE FOR NBIA, WE PROVIDE SUPPORT TO FAMILIES, EDUCATE THE PUBLIC AND ACCELERATE RESEARCH WITH COLLABORATORS FROM AROUND THE WORLD.
RESEARCH The Association raises money to fund grants & clinical projects for scientific and medical research to assist in finding a cure for NBIA Disorders. In this year, $57,007 was raised for research. This year the Association awarded one NBIA research grant of $45,000 for a FAHN study. The Association also entered into a contract under a collaboration with AISNAF and Hoffnungsbaum (sister organizations in Italy & Germany) awarding a contract for an MPAN study. NBAI-DA's 1/3 share of the contract cost is approximately $8900. Additionally, the Association participates in holding International Scientific Symposia every two to three years. The Symposium provides a forum for researchers to share information and common interests, laying the groundwork for potential collaborations in the future. The Seventh International Scientific Symposium was held as a virtual event from September 30th to October 4th, 2020 and hosted by the Association. The Eighth International Scientific Symposium will be held as an in-person meeting in Lausanne Switzerland October 14-16, 2021.
EDUCATION & SUPPORTThis program encompasses many areas of work by the organization: The Association publishes a free newsletter, about three times per year. The newsletter promotes awareness of NBIA, educates the public and medical community about these rare disorders, supports affected families, and disseminates information on NBIA research and treatments. Family Conferences are held every two to three years. Conferences provide a forum for NBIA-affected families from around the world to network, receive information about research and treatments, share information, and support each other. The 11th International Family Conference will be held virtually May 20-23, 2021. Also, the Association responds to general emails from NBIA families, from the public, and others in addition to all dissemination activities. The Association maintains a web presence at www.nbiadisorders.org which provides a database of current, accurate information on NBIA. The Association also holds virtual webinars on topics of interest throughout the year and has recently started zoom support group meetings for NBIA families. The Association has a Networking Program, a Facebook group & Facebook cause page, is on Twitter, Instagram and Linked-In, has multiple videos posted on an NBIA You-Tube Channel, and has a Social Media Director. These all provide a forum for affected individuals, their families, caregivers and others affected by someone living with NBIA to receive emotional support and to share information. These functions also help promote awareness and educate the public and the medical community about NBIA Disorders.
NBIA ALLIANCEThe Association is acting as fiscal agent for the NBIA Alliance. The Alliance is an umbrella organization for NBIA patient advocacy non-profit associations in 10 countries. The Alliance works to further NBIA research and helps to maintain an International Patient Registry and Biobank.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| Patricia V Wood | President | 40 | $49,595 |
| Richard Tifone | Treasurer | 3 | $0 |
| Mary Tapke | Secretary | 2 | $0 |
| Erin Davis | Trustee | 3 | $0 |
| Matthew Ritzman | Chair | 4 | $0 |
| Stephanie Zhadkevich | Trustee | 2 | $0 |
| Amber Denton | Trustee | 2 | $0 |
| Sara Doerr | Trustee | 2 | $0 |
| James Bourgeois | Trustee | 2 | $0 |
| Kimberly Burke | Trustee | 2 | $0 |
| Meg Talley Dyer | Trustee | 2 | $0 |
| Veronica Bonfiglio | Trustee | 2 | $0 |
| Mary Ann Roser | Vice President | 4 | $0 |
| Susan Laupola | Trustee | 3 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202110129349300301_public.xml