Start the New Year with a splash with our new CEO KateDecember 5, 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
Join us in the Cole Classic 1km Swim this February!
Join our new CEO Kate as she takes to the seas with a team of FSHD champions to raise funds for FSHD Global on 4th February 2018 at the Cole Classic Ocean Swim at Manly.
As the perfect ocean swim for beginners, Kate is inviting people to join in this fun event by swimming with her on the 1km course and fundraising for a cure for FSHD. She will be leading a few practice swims beforehand on the course from Shelly Beach to Manly so that participants can come along and familiarise themselves with the course.
When: Sunday 4th February 2018
Where: 1 km swim from Shelly to Manly Beach, Sydney, NSW
We hope you join us for a fun day out on the beach on Sunday 4 February.
How do I register?
Register yourself online for the event here. When registering, join the FSHD Global Team to help us keep track of who is on our team and register for “Back of the Pack”.
How much will it cost?
For the 1km swim, early bird entry before January 23rd costs $45 per adult. After January 23rd entry is $55 per adult.
How long is the course?
There are a number of options to choose from however the FSHD team will be entering the 1km event together. If you are a seasoned swimmer please feel free to participate in the longer distances if you’re up to the challenge!
What if I am a beginner?
This is the perfect race for you. The Cole Classic begins at Shelly Beach, just around the corner from Manly. It is a very sheltered beach and a great place for your first ocean swim. The course takes swimmers out from Shelly Beach, around a couple of bright coloured markers and then into Manly Beach.
When are the training sessions?
The first training get-together for the FSHD Global team will be led by our CEO Kate and will be held on at 9 am on Saturday 16th or Sunday 17th December, weather permitting. This first meeting is designed for people to come along and see the course, and we will have a swim together along part of the course. You can bring your flippers and a snorkel if you wish and we’ll be taking it pretty easy on the day. We hope to run two more training sessions along the course in January, but in between it’s not a bad idea to hit the pool to do a few laps and increase your swimming fitness levels.
What will I need?
A comfy swimming costume, a pair of goggles, and a swimming cap if you wear one. A towel and sense of adventure.
Do I need to be fit?
Anyone who can swim is capable of doing the Cole Classic 1km swim. It is the premier beginners event in Sydney for those wishing to try open water swimming in an event that is very well supported. Each year at the event there are many people participating in their first ocean swim and of the 1887 people who entered the 1km swim last year, every single person completed the course!
Can I wear a wetsuit or flippers?
Organisers will allow participants to wear wetsuits, flippers and fins only in the 1km Back of the Pack categories to ensure fair competition. Wearing any of these items prohibits swimmers from claiming a place/prize.
What will the event be like on the day?
The Cole Classic is lots of fun and is a well supported ocean swim, with loads of volunteer board riders and surf life savers placed along the way to cheer you on, give you encouragement or help you out if you need it. Water safety patrols are carried out by Surf Life Saving Club members from Manly SLSC and nearby surf lifesaving clubs who crew inflatable rescue boats, all with radio communications.
How do I create a fundraising page and join the FSHD Global Team?
Everyday Hero is an excellent platform to promote your fundraising, receive and track donations. Simply create your page and select us as your benefiting charity. Once your page is created, join the FSHD Global team. This way, the funds you raise will be counted towards our team goal along with everyone else raising funds for FSHD Global in the Cole Classic.
What do I say on my Fundraising page?
Tell your story! Share your passion for why you are participating in the Cole Classic, explain why you are trying to raise money and why you are personally moved to support FSHD Global. We will also provide you with some suggested wording for your fundraising page if you need assistance.
How do I successfully Fundraise?
The key is making it personal. Keep your network, family & friends updated on your progress. What obstacles have you come across? What are you really enjoying? Upload photos, videos or short updates in the lead up to the event.
Share your updates on your social media. Ask your friends, family or colleagues to support you in your journey. Don’t forget to tag FSHD Global in these posts so we can share your successes!
Update your email signature at work or at home to add a line at the bottom which includes the web address of your Hero Page.
People are forgetful – update your Hero Page and contact your supporters again. People mean to donate, but sometimes it gets pushed to the bottom of the inbox and they forget. It usually takes more than one round of emails to nudge everyone into action, so donʼt feel embarrassed about asking people again.
Ask to be included in your company website or newsletter. Lots of companies encourage staff to participate in charitable events and fundraising, so ask your company if they are willing to include something about you on the company website or the intranet or company newsletter. Some companies offer a donation-matching scheme, where they will match the amount of money an employee raises.
Make a poster and put it up in the office kitchen, local supermarket, gym, school or anywhere else you can get permission. Use the poster to ask people to visit your Hero Page and support you. If you would like to encourage friends or colleagues to participate, download our poster here.
Donʼt stop fundraising when the event finishes – a surprising number of donations are received after the event has taken place. Once youʼve recovered, update your Hero Page again and email it to your contacts. Itʼs a great way of letting those who have supported you know you have achieved your goal, and of prompting anyone who still hasnʼt donated to do so.
Thank your donors! Let them know their donation has been noticed and appreciated.
For more information on how you can get active and help raise awareness and funds for FSHD, contact Kate on (02) 8007 7037 or at Kate@fshdglobal.org. See you there!