Tania’s StoryDecember 7, 2018
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:
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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
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.
This is Tania’s Story…
I was diagnosed with FSHD when I was 12, but I’ve had the symptoms for as long as I can remember. As a child, I was always slower at sports and it was an effort to catch up to the other kids. I was tired, slow and I couldn’t smile. It was very frustrating. I had terrible balance but loads of determination – it took me a while but I finally managed to ride a bike after all the falls and that was a great day.
The symptoms got worse as I grew older – making raising my arms difficult and painful. At 23 I had an operation to fuse my shoulders straight. I was very excited as I would have straight shoulders and be able to move with no pain. The operations were successful and my determination was evident here too – even when I was in an upper body cast I’d still go dancing with my friends at our local disco! I just wore a big jumper to cover it and got out on the dance floor with my friends.
But jokes aside, life with FSHD is really tough. As the weeks and years go by life gets harder as I keep losing piece by piece of my physical self. Every month I realise that I can’t do something that I could do last month. It’s really heartbreaking. I’ve also had to watch my mum and family go through it – They have the FSHD gene too. I’ve spent the last ten years as my mum’s carer, and this has been so hard watching her waste away before my eyes.
Mum sadly passed away on 30 April 2018 because of FSHD wasting away of her muscles she was unable to swallow and breath. This insidious disease took her life away. Mum was a fighter until the end. Mum had no energy and was finding it difficult to breath she had her eyes closed when I asked my daughter to come and say good-bye to her Nonna. Francesca gave mum a kiss on the head and said “I love you Nonna so much!” My mum using all the energy she had left opened her eyes looked up at her granddaughter and said “I love you too amore so much!” They were mums last words.
I gave birth to a healthy daughter in 2004. By then scientists had identified the faulty gene for FSHD, and though IVF we were able to block the gene so my beautiful 13-year-old daughter is FSHD free and doesn’t have to go through what I have. I am the proudest mum. My daughter brings light and love to my family and I’m so happy she’s bright, happy, healthy and FSHD free.
I’ve been involved with FSHD Global for about 8 years now. Three of those have been as a volunteer and the last 10 months as an office assistant.
Working with the team at FSHD has given me such a sense of purpose. I’m desperate for a cure and through this role I feel like I’m helping everyone else across the world who is also living with FSHD. I really I love my job!
The fact that the Foundation exists and has done so much in its short life also gives me so much hope that a cure will be found. As a sufferer you can feel so helpless and I know that the Foundation will find a cure, it’s just a matter of time. When I meet other people with FSHD through my contact with the Foundation I realise that like me, they are relying so much on the Foundation for a cure. Hope is something that we all share and we’ll never stop hoping.