AMOUR SCIENCE FOUNDATION
To find a cure for Congenital Disorders of Glycosylation (CDG)
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
2021
Principal Officer
Misak Zetilyan
Co Principal Officer
Hagint Babakhanian
Main address
13188 Whistler Ave
Granada Hills, CA 91344 USA
Formerly known as
Alpha Epsilon Omega Foundation Amour Fund
EIN
87-2127837
NTEE code
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
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
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.
Support
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.
Advocacy
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.
Where we work
External reviews
Photos
Videos
Our results
How does this organization measure their results? It's a hard question but an important one.
Evaluation documents
Download evaluation reportsNumber 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
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
To find a cure for Congenital Disorders of Glycosylation (CDG)
What are the organization's key strategies for making this happen?
Fund research for developing a cure and treatment for CDG
Advocate for CDG screening
Raise awareness about CDG
Provide assistance to CDG families
What are the organization's capabilities for doing this?
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
What have they accomplished so far and what's next?
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
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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 directorsas of 03/05/2023
Misak Zetilyan
Hagint Babakhanian
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
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The organization's co-leader identifies as:
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