Get PositiveMarch 19, 2017
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
Get Positive - A piece by FSHD Patron Justin Reid
You hear it a lot. “Just stay positive.” It’s definitely good advice but sometimes I feel like yelling in their face,”Well OBVIOUSLY !!!”. If it was easy, if I could just flick a switch and be positive I’d do it !
So how do you get positive when you’re feeling overwhelmed and defeated ? At the age of 14 I certainly felt like my world had fallen apart. When I was 13 my father left the family. 6 months later I was diagnosed with FSHD.
At that age I didn’t really understand what the diagnosis meant. From the faces of my family and the doctors I knew it was serious and it was bad. The specialist explained the nature of my condition and what it meant for my future. He painted a picture of continuous and inevitable physical decline. On a chart you would see the line always falling, with some plateaus where the condition is dormant, but always falling again as the Dystrophy became active. The future was all downhill. How do you get positive about that ?
The short answer is that you can’t. I spent a lot of years being angry and fighting the physical decline. Classic denial I suppose ! It was a war I could never win. Eventually I asked myself the question, “Why am I fighting this war?” The answer came, “To find peace.” I worked with a counsellor and did some reading, including a book on Buddhist philosophy. One sentence in this book changed my life. It said,”The causes of suffering contain within them the means of release from suffering.”. Somehow this seemed like the answer I was looking for.
I thought about that sentence a lot. What was the secret that lay hidden in those words ? Eventually I decided they were telling me to stop blindly fighting and look inside myself with fresh eyes. To see my life as more than just a physical process. To see my life as a journey of personal evolution where adversity drives healing, learning and growth.
With this realisation I saw that as my life progressed over time and the FSHD took its inevitable course the difficult times offered rich opportunities for self evolution. Opportunities to find within myself strength, courage, wisdom and compassion. Now the chart of my life became a continuous and inevitable upward line. Now I had something to really get positive about.
Of course it sounds great in theory but living it in the real world is a different story. I still get frustrated and feel down when things are difficult and seem unfair. I still react to situations and have to catch myself before I spiral down into negativity. But now I’m always looking for the lesson, for the opportunity to be wiser and stronger. To be a bigger person. The opportunity is always there.
So now when someone says to me, “Just stay positive.”, I smile and say, “Yeah, thanks.” and think to myself, “I’m already there buddy, I’m already there !”.