GOLD2022

ASSOCIATION FOR GLYCOGEN STORAGE DISEASE

aka AGSD   |   Waterloo, IA   |  www.agsdus.org

Mission

The mission of the Association for Glycogen Storage Disease shall be to protect and promote the best interests of all persons affected by Glycogen Storage Disease; to act as a vehicle of communication on Glycogen Storage Disease-related matters and to publish and distribute suchmaterial to all members of the organization (but not necessarily restricted to members of the organization); to promote the establishment and improvement of facilities and the management of such facilities for the treatment, study, education, shelter, recreation, recuperation and other general benefit to Glycogen Storage Disease affected persons; and to act as a focus for scientific, educational, and charitable activities related to the disease.

Ruling year info

1980

President

Kim Burney

Vice-President

Rebecca Lichucki

Main address

1542 Flammang Dr. PMB 1004

Waterloo, IA 50702 USA

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EIN

42-1130450

NTEE code info

Specifically Named Diseases (G80)

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

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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?

AGSD Annual Patient/Family/Medical Conference

To educate and support patients and families affected with any of the Glycogen Storage Disease

Population(s) Served

Where we work

Financials

ASSOCIATION FOR GLYCOGEN STORAGE DISEASE
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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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ASSOCIATION FOR GLYCOGEN STORAGE DISEASE

Board of directors
as of 10/22/2022
SOURCE: Self-reported by organization
Board chair

Brian Pawlik

Priya Kishnani

Brian Pawlik

Bert Bachrach

Kim Burney

Iris Ferrecchia

Irene Helley

Rebecca Lichucki

Jon Burney

Traci Resler

Patrick Ryan

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