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FSHD Global Research Foundation Limited
Low
Annual Giving
$100K
Grant Range
$5K – $500K
Tips for Applicants
Applicants should demonstrate clear alignment with FSHD research, patient care, or support services. Proposals addressing the needs of adults with this specific muscular dystrophy condition, particularly in underserved regional areas, are likely to resonate with this foundation's mission.
Giving Philosophy
The foundation prioritizes medical research and support services for individuals affected by FSHD, a rare genetic condition. It appears to take a disease-specific approach, focusing resources on understanding and addressing this particular muscular dystrophy while supporting affected individuals and their families across multiple life stages.
ACNC Financial History
| Year | Grants Given | Revenue | Total Assets | Net Assets |
|---|---|---|---|---|
| FY2023 | $306K $55K AU + $252K intl | $1.5M | $1.9M | $1.9M |
| FY2022 | $652K | $758K | $1.6M | $1.6M |
| FY2021 | $414K $231K AU + $184K intl | $556K | $3.3M | $3.3M |
| FY2020 | $553K $172K AU + $381K intl | $788K | $3.5M | $3.5M |
| FY2019 | $689K $117K AU + $572K intl | $1.5M | $3.8M | $3.8M |
| FY2018 | $834K $294K AU + $540K intl | $1.6M | $3.8M | $3.8M |
| FY2017 | $1.1M $444K AU + $632K intl | $1.7M | $3.8M | $3.8M |
| 7yr total | $4.5M | Source: ACNC Annual Information Statements | ||
Focus Areas
healthindigenous
Geographic
AU-ACTAU-NSWAU-QLDAU-VICAU-WA
Recipients
communityyouthageddisadvantageddisabilityrural remoteindigenous
Financial Details
Source of Wealth
Corporate foundation structure, likely established through corporate or private sector contributions focused on FSHD research and patient support.
Board & Leadership
Mrs Natalie Cooney
chair
foundation_board
Ms Natalie Pidgeon
chair
foundation_board
Natalie Cooney
chair
ACNC
Natalie Pidgeon
chair
ACNC
Barry Robinson
director
ACNC
Bechara Shamieh
director
ACNC
Bill Moss
director
ACNC
David Columbro
director
ACNC
David Mackay
director
ACNC
Dr Scott Baker
director
foundation_board
Glenn Willis
director
ACNC
Malcolm Beville
director
ACNC
Mr Barry Robinson
director
foundation_board
Mr Bechara Shamieh
director
foundation_board
Mr David Columbro
director
foundation_board
Mr David Mackay
director
foundation_board
Mr Glenn Willis
director
foundation_board
Mr Malcolm Beville
director
foundation_board
Mrs Vida Virgo
director
foundation_board
Scott Baker
director
ACNC
Vida Virgo
director
ACNC
Christine Ann Steinmetz-Weiss
board member
ACNC
foundation_board
Mr Bill Moss AO
other
foundation_board
Mrs Emma Weatherley
other
foundation_board
Mrs Ninsun Gabriel
alternate director
foundation_board
Mrs Ramona Roach
other
foundation_board
Ms Sarah Korin
alternate director
foundation_board
Ninsun Gabriel
other
ACNC
Sarah Korin
other
ACNC
Linked from structured person roles rather than unstructured foundation summary text.
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Data Sources
Profile quality: low
Foundation profile updated: 10 March 2026 (59 days ago)
Website pages scraped: 5
Added: 27 February 2026 (70 days ago)
View on ACNC Register →