NBIA DISORDERS ASSOCIATION

from discovery to cure

aka NBIADA   |   El Cajon, CA   |  www.NBIAdisorders.org

Mission

Our Mission 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. Our Vision A world in which NBIA Disorders no longer causes suffering or loss of life. 1. To provide a supportive environment for sharing needs, concerns and experiences, and up-to-date treatment and care options. 2. To increase recognition of NBIA among healthcare professionals for early diagnosis and optimal care. 3. To participate with our affiliated NBIA lay advocacy groups in other countries. 4. To build an expanding base of contributors to achieve our vision. 5. To encourage, guide and fund research for treatments and cures for NBIA disorders.

Ruling year info

1997

President & CEO

Ms. Patricia Wood

Main address

2082 Monaco Ct.

El Cajon, CA 92019 USA

Show more contact info

Formerly known as

Hallervorden-Spatz Syndrome Association

EIN

33-0712327

NTEE code info

Health Support Services (E60)

Alliance/Advocacy Organizations (A01)

Fund Raising and/or Fund Distribution (C12)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

We are working to discover treatments and eventual cures for Neurodegeneration with Brain Iron Accumulation (NBIA) disorders, which are ultra-rare. Currently there are 10 NBIA disorders with genes identified, the most recent being in 2012. We understand from the researchers that there may be other genes yet to be discovered in connection with those currently diagnosed as idiopathic NBIA. Since our inception, we have been involved and/or supported every significant discovery regarding these disorders. Typically, families spend years seeking a correct diagnosis for their child/loved one. Thanks to improvements in genetic testing, diagnoses are more readily made than ever before. Once a diagnosis is made, the work begins as families seek proper treatments from the very few clinicians with knowledge about the disorder. They seek support as they face their "new norm" and appreciate connecting with others. We continue to support them with information, advocacy, and connections with others.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Research Grants

NBIA disorders are ultra-rare and very debilitating. Funding to find treatments and cures is heavily reliant on families of those diagnosed with NBIA. Utilizing the wisdom of our Scientific and Medical Advisory Board to screen applications from researchers, the Board of Directors grants funds. Researchers provide written reports for scientific publication as well as for lay audiences. Monies for the research grants primarily come from donations raised by families dealing with NBIA disorders.

Population(s) Served
People with diseases and illnesses

Families and individuals facing NBIA disorders need information and support to learn more about the condition, and how to access the best care possible. We personally take calls and emails, responding promptly to requests. We provide a robust website filled with information and links to published articles to assist people through their NBIA journey. We maintain a social media presence and volunteers operate online support groups for those wanting to connect.

Population(s) Served
Caregivers
People with diseases and illnesses

We provide an informative newsletter three times per year with articles about research underway, planned, and completed. It also includes information about fundraising activities and donors, and ways to reach out for assistance. Between print and electronic versions, each issue is distributed to 4,500 households.

Population(s) Served
Caregivers
People with diseases and illnesses

Every two years an International NBIA Disorders Association Family Conference is held to bring together families from around the globe along with scientists, clinicians, and researchers. Together, families learn the latest research on the disorders afflicting their loved ones, as well as connect with one another. The Tenth International Conference was May 30 - June 2, 2019. Planning has begun for 2021.

Population(s) Served
Caregivers
People with diseases and illnesses

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of clinicians who have at least 5 NBIA patients in their care.

This metric is no longer tracked.
Totals By Year
Population(s) Served

Health, Family relationships, Age groups, Ethnic and racial groups, Work status and occupations

Related Program

Education & Family Support

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

Families dealing with these ultra-rare disorders are better served when they can see a clinician who has some experience treating patients with them. We are working to build this network.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Goal 1: Formalize and expand partnerships and collaborations with other organizations that interact with the NBIA Disorders community. Establish adequate staffing and communication channels to ensure formal, long-term partnerships that are in the best interest of the children and families served.
Goal 2: To provide comprehensive support services to affected families and individuals and to lead advocacy efforts as the recognized authority for this family of genetic disorders.
Goal 3: Increase and expand our Research Grants Program to fund promising research that may lead to major grant support and programs that will hopefully lead to clinical trials and ultimately to treatments and cures.

● Maintain and strengthen linkages between NBIA Disorders Association, members of the NBIA Alliance, the National Organization for Rare Disorders (NORD), National Institutes of Health (NIH), Genetic Alliance, Global Genes Project, EURORDIS, area hospitals and clinics, rare disease organizations, bio-technology companies, pharmaceutical companies, community foundations, private foundations, and family members of individuals with NBIA disorders.
● Expand beyond these partners to other agencies, universities, and medical organizations.
● The president will be expected to oversee the entire operation, including deployment of resources, maintaining the service and educational missions, seeking future sources of revenue, and contracting with institutions and third-party researchers who are part of our Research Grants Program.
● Adopt technology advancements that aim to increase time effectiveness, cost effectiveness, convenience to donors, reporting and analytics, customer relationship management, and optimizing organization operations.
● Recognize website as a capacity building tool that will help NBIA Disorders Association more effectively fulfill its mission. A modern content management system that will allow NBIA to keep the website updated much more easily freeing us to reach our ultimate goal to cure these disorders and one fully responsive to whatever type of technology one is using to access information.
Increase and expand our Research Grants Program to fund promising research that may lead to major grant support and programs that will hopefully lead to multiple clinical trials.

Our Board of Directors is primarily comprised of individuals with a family member diagnosed with an NBIA disorder, so the needs and understanding of the community are clear. In addition, a Scientific and Medical Advisory Board (SMAB) provide scientific and medical guidance regarding research goals and the state of the field. The SMAB assists in reviewing all research calls, and all responses. They also meet several times per year jointly with the board, and are frequent presenters at our biennial family conferences.

NBIA Disorders Association works collaboratively with its growing roster of member families, over 750 families at present, representing them at several large research meetings each year and providing opportunities for them to join NBIA Disorders Association in advocacy on behalf of their families and those affected by these disorders.

NBIA Disorders Association provides information about NBIA through its publications, website, and other educational offerings. Each year, NBIA Disorders Association responds to thousands of email inquiries from individuals, families, teachers, therapists, social workers, medical professionals and researchers.

Recognizing that rare diseases are a global public health challenge, NBIA Disorders Association helped found the NBIA Alliance and has been the fiscal sponsor since 2017. The NBIA Alliance, established in January 2012, is an international umbrella organization for NBIA patient organizations. Currently there are ten countries represented by the Alliance. The are: Canada, France, Germany, Hungary, Italy, Netherlands, Poland, Switzerland and the United States. Our alliance will steadily grow to more partners. The collaboration with the international alliance strengthens our organization and allows us greater collaboration for research, education and information dissemination in the United States and worldwide.

We also collaborate with or are members of: National Organization for Rare Disorders (NORD), Rare Disease Day Partner, Global Genes Foundation Alliance Member, Genetic Alliance member, and RareConnect, a partnership with EURORDIS.

Our organization has funded over 2.3 million in research for NBIA disorders. Grants are awarded to qualified researchers to initiate pilot studies, the results of which are intended to be used to obtain larger multi-year grant funding. Many of these grants have led to the discovery of NBIA genes and the development of mouse and fruit fly disease models.

We are also funding gene therapy, stem cell therapy, repurposing drug therapy, and other cutting edge technology in our quest to help bring us to clinical trials that result in new and effective treatments.

We have held 11 family conferences with families coming from around the world to participate. In addition to the important social interactions possible at these conferences, we also inform families of the latest research initiatives and progress with researchers attending and sharing their work. In addition, we have a program to bring clinicians to these conferences to help them learn more about these disorders so that they can better serve their current NBIA patients and also be able to adequately serve additional NBIA families.

Started in 1996, we were the first NBIA organization formed and continue to be the leading organization for NBIA disorders. We mentor new organizations and collaborate whenever possible as we strive to achieve our ultimate mission of finding cures for all NBIA disorders.


Financials

NBIA DISORDERS ASSOCIATION
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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NBIA DISORDERS ASSOCIATION

Board of directors
as of 10/6/2021
SOURCE: Self-reported by organization
Board chair

Matthew Ritzman

NBIA Disorders Association

Term: 2020 - 2022

Susan Laupola

Veronica Bonfiglio

Kimberly Burke

Pamela Craft

Kathryn Kadamus

Matthew Ritzman

Erin Davis

Mary Roser

Meg Talley Dyer

Sarah Doerr

Amber Denton

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? No
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 10/06/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data