Shane’s StoryDecember 8, 2018
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 Foundation
Facio Therapies AnnouncementFSHD Global Research Foundation
2019 Sydney Chocolate Ball:
Save the date!FSHD Global Research Foundation
Wyndham Destinations Corporate Surf Challenge 2018:
Wyndham Destinations Corporate Surf ChallengeFSHD Global Research Foundation
“Bill Moss the single-minded biotech and a search for a cure” – The Australian:
By Sarah-Jane Tasker - 26th of May 2018FSHD Global Research Foundation
Grant Applications – Now Open:
3D Muscle Printing Biotech TenderResearch, Grant Applications, Science
Start 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 Muscles
A blog by Tracey Jackson:
International Day of People with a Disability 3 December 2017International Day of People with a Disability, FSHD, Community,
FACIOSCAPULOHUMERAL DYSTROPHY LIFESTYLE EDUCATION & EXERCISE PROGRAM (FSHD-LEEP)FSHD, Exercise, Canberra
Show your support for FSHD Global Research Foundation:
2017 Charity of the Year in the Australian Charity awardsCharity of the year, Workplace giving, Supporters
Bill 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 2017FSHD Media, Bill Moss AO, Alan Jones
2017 Charity of the Year!:
CHARITY OF THE YEAR ANNOUNCED AT THE AUSTRALIAN CHARITY AWARDS 2017FSHD Global, Awards, Charity of the Year
I’m 10 years old and I want to tell you what living with FSHD is like for me.FSHD, Community Story, Inspiring
Join our team and start fundraising!Fundraising, How you can help, how to register
The power of workplace giving:
Start making a difference todayFundraising, Workplace Giving, How you can help!
World FSHD Day:
Get planning for this June 20World FSHD day, Fundraise
Bone Health in FSHD:
FSHD Global Research Grant 23 UpdateBone health, FSHD, Grant 23
Our Newest Partnership: Australian Opal Cutters & Pearl Divers:
We are a proud charity partner of Australian Opal Cutters & Peal Divers.Corporate partner, pearls
Get Positive - A piece by FSHD Patron Justin ReidLiving with FSHD
Open Gardens – Mount Wilson:
FSHD Global is proud to be hosting an open garden this April 29 & 30.open gardens, Mount Wilson, FSHD Global
FSHD Global proud to be involved in unique ethical partnership:
Cape York Native Title Holders Partner with Corporate Australia to Establish Economic Empowermentcharity, donations, business, ethical, indigenous
FSHD Educational Toolkits:
Getting the support you and your health professionals needFSHD, consensus, medical guide
Rare Disease Day:
Awareness is key.FSHD, RareDiseaseDay, fundraising, awareness
A major issue for FSHDfatigue, fshd, exercise, physiotherapy
Reading the science:
How to tell the good from the not so good.FSHD, facioscapulohumeral muscular dystrophy, publications, science
Facio-therapies announce breakthrough:
Facio-therapies recently announced a breakthrough development in FSHD drug discovery.research, science, fshd, facioscapulohumeral dystrophy, biotech
Exercise & FSHD:
The Latest Studyconsensus, FSHD, exercise
We 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, FSHD
Short Story from Daniel Howe – Life with FSHD:
Lavender BluesFSHD, lavender,
Folo – Shopping for Love:
A new way of givingfolo, philanthropy, giving, charity, shopping
A new mechanism for FSHD:
New drug targetsFSHD, D4Z4, Dux 4, science
Seeking a Volunteer Graphic Designer:
Build your portfolio and make a difference at the same time!volunteer, graphic designer
FSHD Global publishes clinical practice considerations for FSHD:
FSHD Global publishes clinical practice considerations for FSHDscience
FSHD : It’s not all just about muscles.:
FSHD: It's not just about muscles.science, muscles, FSHD
FSHD stem cells: revolutionising research:
FSHD stem cells: revolutionising researchFSHD Global Research Foundation
CRISPR & FSHD:
Harnessing a New TechnologyScience, DNA
Altering Gene Expression:
New tools with big potentialScience DNA
Treatments for FSHD:
Small Molecules: Offering hope for people with FSHDNature chemical biology
Shane’s Christmas wish is to find a cure for FSHD so that his grandchildren never have to live with this insidious disease
This is Shane’s Story…..
My name is Shane and this is my story. I have just turned 51 years old and I have FSHD.
I was first diagnosed when I was 8 years old with a painful muscle biopsy at the old Royal Newcastle Hospital, I didn’t know what was happening and no one told me what I had, my parents had taken me because I have a long family history of this terrible condition and they wanted me to be tested.
As an eight year old I was a lot skinnier than the other kids and my shoulder blade wings had started to stick out, at that early stage my legs still worked. I was able to have a normal childhood, running, playing sports and even started boxing. It wasn’t until puberty kicked in that things really started to happen, shoulder aches, muscle weakness and the winging of my shoulder blades became more prominent. As a young teenager I became more and more self-conscious about my appearance and tried to hide it away, I would never wear just a t-shirt or no shirt at all. Imagine the embarrassment of being made to participate in the school swimming carnival, standing on the blocks with the other teens pointing and laughing at your appearance.
During my late teens I went through the “Ï hate the world” stage because I didn’t look like anyone else, I rebelled against everything due to anger at this horrible condition, there was no internet to look up information, there were no doctors to talk to, there was nowhere to turn, it was at this time that the girl who would become my wife entered my world, she didn’t care how I looked she loved me for me. We have been together now for 34 years and married for 27. We have 2 beautiful girls who have grown into amazing young ladies, they have not been tested but we hope they not been affected.
My mother and Grandmother explained to me that I had FSHD but no one really knew what was going to happen in the future. I knew my Aunty was in a wheelchair by age 40 and my Grandmother was in one by age 60. Both of my parents passed away when I was aged 25, my aunty shortly after, so there was no one except my grandmother who I could speak to about what was happening and even then she did not know much about FSHD just that she had it and it was in the family.
I still work fulltime at a small family company that knows what I am facing and helps where they can with compassion and understanding. Over the last 5 years there has been a rapid decline in my health and mobility. I am now in constant excruciating pain for which I take very high doses of prescription only medication. I can only walk short distances and this is achieved by using a stick, anything more than 20 metres I require a wheelchair to get around. When I do walk I am in constant fear of falling over, because if this happens I cannot get back up unaided. I can no longer bend down to pick things up from the ground, I can no longer lift anything, I can’t even help lift the groceries from the boot of the car or help with chores around the house.
I do not know how much longer I will be able to work as the pain is getting too much, what happens then? I will be stuck at home no longer able to help provide for my family, I can’t get income protection insurance because I have a pre-existing condition. I will be totally dependent on my family for everything, this is not something that sits very well with me. I worry every day how we will pay the mortgage and still be able to live but that’s life I guess, sometimes you get oranges sometimes you get lemons.
We live in an exciting time in regards to finding a cure and providing people who are only now being diagnosed with the information they need to give them an understanding of what is happening to them. My one wish is that a cure can be find so my grandchildren never have to go through this insidious disease so please donate to FSH Global so a cure can be found in the next few years.