GOLD2024

GACI Global

GACI Global is...circulating hope

ARGYLE, TX   |  https://www.gaciglobal.org

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Mission

GACI Global is a nonprofit organization whose mission is to connect families worldwide affected by Generalized Arterial Calcification of Infancy or Hypophosphatemic Rickets caused by ENPP1 or ABCC6 deficiencies to each other and to the medical community. The organization strives to provide current educational resources and supports ongoing research. GACI Global is...circulating hope.

Ruling year info

2019

Co-President / Founder Director

Ms Liz Molloy

Co-President / Founder Director

Ms Christine O'Brien

Main address

PO Box #123

ARGYLE, TX 76226 USA

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EIN

83-3344416

NTEE code info

Heart and Circulatory System (G43)

Alliance/Advocacy Organizations (G01)

Fund Raising and/or Fund Distribution (G12)

IRS filing requirement

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

Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Generalized Arterial Calcification of Infancy (GACI) and Autosomal Recessive Hypophosphatemic Rickets Type 2 (ARHR2), caused by ENPP1/ABCC6 Deficiency, are rare genetic conditions. GACI causes an abnormal buildup of calcium within the walls of the arteries which can cause stroke, heart attack, and death. People with ARHR2 have low phosphate blood levels in the blood (hypophosphatemia) as a result of renal phosphate wasting. ARHR2 can cause bone pain/fractures, growth defects, dental issues, and skeletal deformities. ENPP1/ABCC6 Deficiency causes other complications too and patients are usually followed by a team of specialists including cardiology, endocrinology, nephrology, orthopedics, physiotherapy, dental, audiology, and ophthalmology. GACI Global wants to spread awareness and to promote and support research into treatments that will lead to life-saving and life-enhancing treatment for people affected by GACI/ARHR2 other complications associated with ENPP1/ABCC6 Deficiency.

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?

Making Connections

GACI Global strive to connect families affected by Generalized Arterial Calcification of Infancy or Hypophosphatemic Rickets caused by ENPP1 or ABCC6 Deficiencies to each other and to the medical community.

Population(s) Served
Adults

Where we work

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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.

GACI Global is a nonprofit organization whose mission is to connect families affected by Generalized Arterial Calcification of Infancy or Hypophosphatemic Rickets caused by ENPP1 or ABCC6 Deficiencies to each other and to the medical community. The organization strives to provide current educational resources and supports ongoing research. GACI Global is...circulating hope.

We hope to connect families affected by GACI/ARHR2 to each other, and organizing a family conference where these families could meet each other would be one of our goals.

We have created an online presence with a website and social media. We are working with researchers and the medical community to support research and spread awareness of GACI/ARHR2. We promote our brand at events and through a series of fundraising campaigns.

Our organization consists of a very enthusiastic and motivated team. We are all the parents of children affected by GACI/ARHR2, and by working with researchers, doctors, and parents we feel that we can achieve our goal to spread awareness of GACI/ARHR2 and support research into finding treatments for GACI/ARHR2.

We have a wonderful Medical Advisory Board working with us to ensure that our website is up to date and accurate.

We have:
-Set up GACI Global and it has been incorporated in the state of Texas.
-Achieved 501(c)(3) nonprofit charitable status.
-Developed and launched our brand.
-Launched the gaciglobal.org website.
-Been successful in getting GACI/ARHR2 listed on several rare disease databases.
-Been successful in getting GACI Global listed against GACI/ARHR2 on rare disease databases.
-Updated the Wikipedia entry for Generalized Arterial Calcification of Infancy.
-Held the first GACI/ARHR2 Family Meeting in San Diego in September 2019.
-Held GACI/ARHR2 Awareness Days in 2019, 2020, 2021, and 2022.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, We don’t have the right technology to collect and aggregate feedback efficiently, It is difficult to find the ongoing funding to support feedback collection

Financials

GACI Global
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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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lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

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

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

GACI Global

Board of directors
as of 01/26/2024
SOURCE: Self-reported by organization
Board co-chair

Ms Liz Molloy

GACI Global

Term: 2019 -


Board co-chair

Ms Christine O'Brien

GACI Global

Term: 2019 -

Liz Molloy

GACI Global

Christine O'Brien

GACI Global

Michael Lemanski

GACI Global

Anne VanWyk

GACI Global

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 ? Not applicable
  • 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? Not applicable
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes