World FSHD Day is held every year on June 20th and aims to raise public awareness for FSHD. Few members of the public have never heard of Facioscapulohumeral Muscular Dystrophy, and many affected individuals don’t know that they have the condition.
FSHD one of the most common forms of muscular dystrophy affecting over 1 million people worldwide.
This international day aims to bring awareness of this debilitating disease to the general public and decrease the misdiagnoses within the medical industry.
Below you will find a range of tools and ideas to help you – help us raise awareness!
There are a number of ways that you can get involved and help support World FSHD Day.
Slice, smile and snap! Taking part in the Orange Slice Selfie campaign is just that simple. Though each selfie includes the classic orange slice in place of a smile, what makes each one special is what you add to it. Grab your friends, family or pets and help us to bring awareness to FSHD.
Don’t forget to include the #WorldFSHDDay hashtag in your post!
Here are some suggestions for posts:
There are a range of different platforms that you can use to help create your event online:
To help you get inspired, here are some ideas to help you plan your virtual event.
Host a virtual game night with multiplayer apps. Schedule a date a time and ask everyone to donate to take part in the game night.
Here is a list of applications and games that you can use:
All of these games are available through the app store and google play.
Create a fundraiser for yourself or someone else through Facebook on World FSHD Day. You can then share this on your personal page. with your friends and/or connect friends to your fundraiser.
People can then donate to your fundraiser in just a few clicks without leaving Facebook. This is a quick and easy way to help support World FSHD Day.
Morning or afternoon teas are a great idea to get everyone involved. Host it at your home or work and ask your friends or colleagues to bring a plate and charge an entry fee to attend or a gold coin donation.
Hold a casual or dress up day (wear something orange) at your work and ask your colleagues to donate a set amount for being involved.
Get involved with your local school community by organising a school mufti or orange dress up day for a gold coin donation.
Get together with your friends and family and host a dinner party. Prior to the evening you could seek donations of goods or local vouchers from your community to hold a raffle on the night.
Create a trivia night with your friends or colleagues. Each guest could pay an entry fee to attend with the winner taking home some donated prizes from your community.
Know someone who hosts trivia nights? Ask the host to talk about World FSHD Day and to see donations for the evening.
Step 1
It is important you let us know about your event and become an official FSHD Global fundraiser. This way we can help promote your event and offer assistance in any way we can. Register your event by emailing us at admin@fshdglobal.org
Step 2
Although World FSHD Day’s main goal is raising awareness for the disease, we still aim to raise funds for medical research and education to ultimately find a cure for FSHD. Put a fundraising strategy in place – how much do you want to raise from your event? How will you achieve this? Raffles, gold coin donations, entry fees, guessing competitions and sales are all great ways to raise funds.
Step 3
Consider using a fundraising platform to assist in your fundraising. There is a range of different fundraising platforms you can use. GiveNow, GoFundMe, EverydayHero. These are fantastic websites to help you promote your event, receive and track donations.
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