A blog by Tracey JacksonDecember 3, 2017
Donate to the FSHD Global Christmas Appeal to help find a Cure!FSHD Global Research Foundation
Shane’s Christmas wish is to find a cure for FSHD so that his grandchildren never have to live with this insidious diseaseFSHD Global Research Foundation
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
International Day of People with a Disability 3 December 2017
Let me start by saying …. Let’s all celebrate International Day of People with a Disability. Inclusion is vital for our wellbeing so let’s make this world a more inclusive place for all those with a disability.
My name is Tracey and I have FSHD – Facioscapulaohumeral Muscular Dystrophy.
Despite being considered one of the most common forms of muscular dystrophy in adults and children there are no treatments and no cure.
FSHD is commonly associated with progressive weakening of facial, shoulder and upper arm muscles. However, this explanation does little justice to a disease that can rob us of our ability to walk, talk, smile or even eat. Living with FSHD is a life with pain, fatigue and the social isolation that comes from being reliant on mobility aids.
I’ve spent over half my life in a wheelchair, and following a bad fall in 2012 my life in a chair became permanent. I now use a powered wheelchair, which gives me a little more independence. I have travelled nationally and internationally as an Australian Disabled Rifle Shooter, and when I travel I have no option but to take my manual wheelchair, giving me less independence and putting extra stress on my body. When I travel or go on holidays, I have to leave all the good stuff at home, or hire it which is expensive. While we all love a holiday, without some of the necessary equipment that I have at home, I lose strength much quicker throughout the day and I have a lot more pain to put up with.
The past 5 years I’ve visited many parts of Australia and have found booking an accessible room to suit my needs extremely difficult at times. People with disabilities all have very different needs.
I AM ON A MISSION IN LIFE, and that is one about accessibility and inclusion. My dream is to travel Australia reviewing and rating accessible rooms so that anyone in a wheelchair looking to travel can book a room with absolute certainty knowing that the room will suit their needs. I hope I can make a difference to how we “Wheelies” can holiday with less stress.
I would also like to work with local disability equipment suppliers and accommodation providers to have equipment made available to these rooms so that people like myself don’t have the added stress or expense of carrying our equipment with us or hiring costly equipment when we arrive at our destination.
Accessibility and Inclusion
My own experience travelling with a team of wheelchair athletes has given me so many opportunities to think about accessibility and inclusion, and also given me insight as to how we can fix these problems with a few pieces of equipment provided with our room. I am currently researching prices and planning my approaches to accommodation providers so that I can positively influence the landscape for disabled travellers. My ideal solution would be for us to be able to book the equipment at no extra charge at the same time we are booking our accessible room.
That brings me to another very important topic: My Carer. Carers are just as important to us as the equipment we use. Like us, they need a comfortable bed and a good night rest. I have stayed in some wonderful places that are doing everything right and are incredibly accommodating to myself and my carer, but these tend to be in the minority.
My idea of a perfect room is a large accessible bathroom with a low bathroom mirror that is user friendly. Low pile carpet, wide doorways and room to move are a must, so that I can maneuver my chair easily. Two separate beds is a basic need, please don’t provide us with fold out or trundle beds! One of the beds should also have adjustable bed height to suit a hoist. A view is a bonus and as I mentioned earlier, equipment available at no extra cost is the icing on the cake for the ideal disabled room. It sounds so simple but few places get it right.
I would like to change this.
International Day of People with a Disability gives me the opportunity to talk about issues that the wheelchair community find challenging, and provides a platform for me to amplify my voice so that it is heard and together we can make positive changes that will make the lives of people in a wheelchair easier. If you would like to stay informed of how I am tracking in my quest to improve the comfort of hotel rooms in Australia, you can stay in touch via my personal blog or through Facebook.