Heather’s Story:
Donate to the FSHD Global Christmas Appeal to help find a Cure!
FSHD Global Research FoundationShane’s Story:
Shane’s Christmas wish is to find a cure for FSHD so that his grandchildren never have to live with this insidious disease
FSHD Global Research FoundationTania’s Story:
Tania is our proud NSW State Branch President, FSHD Global Ambassador & Community Liaison and Administration Assistant. She is full of warmth, positivity and laughter despite going through a tough 12 months.
FSHD Global Research FoundationExciting News!:
Facio Therapies Announcement
FSHD Global Research Foundation2019 Sydney Chocolate Ball:
Save the date!
FSHD Global Research FoundationWyndham Destinations Corporate Surf Challenge 2018:
Wyndham Destinations Corporate Surf Challenge
FSHD Global Research Foundation“Bill Moss the single-minded biotech and a search for a cure” – The Australian:
By Sarah-Jane Tasker - 26th of May 2018
FSHD Global Research FoundationGrant Applications – Now Open:
3D Muscle Printing Biotech Tender
Research, Grant Applications, ScienceStart the New Year with a splash with our new CEO Kate:
Join us in the Cole Classic 1km Swim this February!
Cole Classic, Fundraise, FSHD, Muscles for MusclesA blog by Tracey Jackson:
International Day of People with a Disability 3 December 2017
International Day of People with a Disability, FSHD, Community,FSHD-LEEP Progam:
FACIOSCAPULOHUMERAL DYSTROPHY LIFESTYLE EDUCATION & EXERCISE PROGRAM (FSHD-LEEP)
FSHD, Exercise, CanberraShow your support for FSHD Global Research Foundation:
2017 Charity of the Year in the Australian Charity awards
Charity of the year, Workplace giving, SupportersBill Moss AO on the Alan Jones Breakfast Show:
Chairman Bill Moss AO talks with Alan Jones as the Foundation is announced as the Charity of the Year in the Australian Charity Awards 2017
FSHD Media, Bill Moss AO, Alan Jones2017 Charity of the Year!:
CHARITY OF THE YEAR ANNOUNCED AT THE AUSTRALIAN CHARITY AWARDS 2017
FSHD Global, Awards, Charity of the YearSophie’s Story:
I’m 10 years old and I want to tell you what living with FSHD is like for me.
FSHD, Community Story, Inspiring2017 City2Surf:
Join our team and start fundraising!
Fundraising, How you can help, how to registerThe power of workplace giving:
Start making a difference today
Fundraising, Workplace Giving, How you can help!World FSHD Day:
Get planning for this June 20
World FSHD day, FundraiseBone Health in FSHD:
FSHD Global Research Grant 23 Update
Bone health, FSHD, Grant 23Our Newest Partnership: Australian Opal Cutters & Pearl Divers:
We are a proud charity partner of Australian Opal Cutters & Peal Divers.
Corporate partner, pearlsGet Positive:
Get Positive - A piece by FSHD Patron Justin Reid
Living with FSHDOpen Gardens – Mount Wilson:
FSHD Global is proud to be hosting an open garden this April 29 & 30.
open gardens, Mount Wilson, FSHD GlobalFSHD Global proud to be involved in unique ethical partnership:
Cape York Native Title Holders Partner with Corporate Australia to Establish Economic Empowerment
charity, donations, business, ethical, indigenousFSHD Educational Toolkits:
Getting the support you and your health professionals need
FSHD, consensus, medical guideRare Disease Day:
Awareness is key.
FSHD, RareDiseaseDay, fundraising, awarenessFatigue:
A major issue for FSHD
fatigue, fshd, exercise, physiotherapyReading the science:
How to tell the good from the not so good.
FSHD, facioscapulohumeral muscular dystrophy, publications, scienceFacio-therapies announce breakthrough:
Facio-therapies recently announced a breakthrough development in FSHD drug discovery.
research, science, fshd, facioscapulohumeral dystrophy, biotechExercise & FSHD:
The Latest Study
consensus, FSHD, exerciseWe are proud to be recognised by The Australian Charity Awards:
FSHD Global has been recognised as a Winner for Outstanding Achievement in the Australian Charity Awards 2016.
charity, awards, FSHDShort Story from Daniel Howe – Life with FSHD:
Lavender Blues
FSHD, lavender,Folo – Shopping for Love:
A new way of giving
folo, philanthropy, giving, charity, shoppingA new mechanism for FSHD:
New drug targets
FSHD, D4Z4, Dux 4, scienceSeeking a Volunteer Graphic Designer:
Build your portfolio and make a difference at the same time!
volunteer, graphic designerFSHD Global publishes clinical practice considerations for FSHD:
FSHD Global publishes clinical practice considerations for FSHD
scienceFSHD : It’s not all just about muscles.:
FSHD: It's not just about muscles.
science, muscles, FSHDFSHD stem cells: revolutionising research:
FSHD stem cells: revolutionising research
FSHD Global Research FoundationCRISPR & FSHD:
Harnessing a New Technology
Science, DNAAltering Gene Expression:
New tools with big potential
Science DNATreatments for FSHD:
Small Molecules: Offering hope for people with FSHD
Nature chemical biology
FSHD Global Research Grant 23 Update
In a first for the FSHD field, a study has been published looking closely at the morbidity of low bone density and bone fracture risk in patients suffering from FSHD. The FSHD Global Foundation played a particularly proactive role in supporting this study beyond just financial support, including advocating both for not only United States patients but also Australian patients from a centre of Excellence in FSHD research at Concord Hospital in NSW to be included in the study. The findings are therefore of international significance. And moreover, a key member of the scientific committee of FSHD Global, Dr Scott Baker, himself an endocrinologist provided expert comments on the design of the study which were acknowledged in the paper.
The study characterised 94 patients with FSHD. One of the key findings of the study was that there is a correlation between strength, physical function and bone density. This could have implications for the clinical management of FSHD patients, for example it may be wise to use lack of strength and physical function to prompt more frequent scans of bone density. It was also noted that there was a high prevalence of abnormal Vitamin D3 levels. Fascinatingly the risk of fractures was 48% in Australia versus 25% in the United States.
Overall the study indicated a high variability in bone density and other characteristics, and having FSHD does not automatically mean a patient has low bone density. However, the prevalence of mostly traumatic fractures in the patient group overall was high. It is the hope of the foundation that this research paper will draw attention to this important clinical feature of FSHD patients and improve the standards of care not only in Australia but also in other countries.