Organic Acidemia Association Corporation

aka OAA   |   Golden Valley, MN   |  http://www.oaanews.org

Mission

The Organic Acidemia Association is a volunteer non-profit organization whose mission is to empower families and health care professionals with knowledge in organic acidemia metabolic disorders. We support early intervention through expanded newborn screening, solicit contributions and distribute funding that supports research toward improved treatment and eventual cures in the areas of Organic Acid disorders.

Ruling year info

1991

Principal Officer

Mrs. Kathy Stagni

Co Principal Officer

Menta Pitre

Main address

9040 Duluth Street

Golden Valley, MN 55427 USA

Show more contact info

EIN

48-1038050

NTEE code info

Single Organization Support (G11)

Single Organization Support (Y11)

Single Organization Support (H11)

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 have been successful in contributing to research at the NIH which has given attention to many pharmaceutical companies who are currently working on new treatments and a gene therapy for our rare disorders. We need to assist families in traveling to participate in clinical trials, which are set to start soon. We also support the researcher at the NIH - more funding to help develop more treatments for all of our organic acid disorders.

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?

We sponsor a national conference every two years. We publish a newsletter three times a year, for a suggested donation of $25 per year for domestic membership and $35 for international. We also have a roster of families for $5 additional. We host an internet listserv and website. We advocate newborn screening and support research efforts.

Population(s) Served

We host a family conference every other year for families and professionals.

Population(s) Served
Families
Parents

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 clients who report feeling less isolated

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

Families

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Number of support groups offered

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

Families

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Holding steady

Number of list subscribers

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

Families

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

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.

Goals are simply to connect families together to avoid the isolation that often happens when living and raising a child with a rare organic acidemia. We solicit fundraising activities to assist with grassroots assistance for researchers to continually seek better treatments and a cure for our rare disorders.

Strategies include to collaborate with our sponsors to assist in funding a family conference every two years. We continually seek information to share on upcoming research to share at conferences and newsletters. We connect and create a family environment for all of those who are members of our organization.

We have a large network of famlies who have been dealing with these disorders for 25+ years and parents share this knowledge with new families who are being diagnosed on a daily basis.

Our progress is slow and steady...with newborn screening the affects of living with these disorders are minimal and often parents are not in need of as much support as with a child who wasn't caught on newborn screening.

Financials

Organic Acidemia Association Corporation
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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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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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Organic Acidemia Association Corporation

Board of directors
as of 6/25/2021
SOURCE: Self-reported by organization
Board co-chair

Menta Pitre

No


Board co-chair

Kathy Stagni

No

Kathy Stagni

No Affiliation

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? No
  • 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? No
  • 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