AMOUR SCIENCE FOUNDATION

aka Amour Fund   |   Granada Hills, CA   |  amourfund.org

Mission

OUR VISION To find a cure for Congenital Disorders of Glycosylation (CDG) OUR MISSION Fund research for developing a cure and treatment for CDG, advocate for CDG screening, raise awareness about CDG and provide assistance to CDG families.

Ruling year info

2021

Principal Officer

Misak Zetilyan

Co Principal Officer

Hagint Babakhanian

Main address

13188 Whistler Ave

Granada Hills, CA 91344 USA

Show more contact info

Formerly known as

Alpha Epsilon Omega Foundation Amour Fund

EIN

87-2127837

NTEE code info

Birth Defects (G20)

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

OUR VISION To find a cure for Congenital Disorders of Glycosylation (CDG) OUR MISSION Fund research for developing a cure and treatment for CDG, advocate for CDG screening, raise awareness about CDG and provide assistance to CDG families.

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

Amour Fund conducts and funds scientific research in PMM2-CDG. This research includes, but is not limited to, understanding, diagnosis, treatment and cures for the disorder.

Population(s) Served

Amour Fund provides support to patients with PMM2-CDG and their families. Support includes, but is not limited to: website, forums, family/research symposiums, welcome packets, travel grants, medical expense and equipment grants, and more.

Population(s) Served

Amour Fund educates clinicians, researchers, patients, families, and the general public on PMM2-CDG. This education is accomplished through presentations, exhibitions, publications, media outreach, educational materials, social media, and more.

Population(s) Served

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 research studies funded

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

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.

To find a cure for Congenital Disorders of Glycosylation (CDG)

Fund research for developing a cure and treatment for CDG
Advocate for CDG screening
Raise awareness about CDG
Provide assistance to CDG families

Fund medical research for CDG
Raise awareness of CDG and CDG treatment
Assist in ongoing treatments
Add CDG to newborn screening programs
Provide educational assistance
Provide durable medical equipment to children in need
Assist with school placement and education for CDG children
Provide assistance to disadvantaged kids

Were able to have California recognize May 16th as World CDG Awareness Day
Organized the 2017 NOLA CDG Parent, Patient and Physician Meeting
Funded Glycomine who started the first ever clinical trial for PMM2-CDG (CDG-Ia)
Reached 10,000+ views for "What is CDG" video, which was translated to 9 languages
Regularly collaborate with researchers, patient advocates, and scientists
Funded research on liver involvement in CDG
Funded the development of the PMM2-CDG mouse model
Part of the Frontiers in Congenital Disorders of Glycosylation Consortium (FCDGC)
And that's just a few of so many successes.

Financials

AMOUR SCIENCE FOUNDATION
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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
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  • Compare nonprofit financials to similar organizations

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AMOUR SCIENCE FOUNDATION

Board of directors
as of 1/30/2022
SOURCE: Self-reported by organization
Board co-chair

Misak Zetilyan


Board co-chair

Hagint Babakhanian

Organizational demographics

SOURCE: Self-reported; last updated 12/21/2021

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
Armenian
Gender identity
Male
Disability status
Person with a disability

The organization's co-leader identifies as:

Race & ethnicity
Armenian
Gender identity
Female
Sexual orientation
Decline to state
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data