selfie noun, informal – a photograph that one has taken of oneself, typically one taken with a smartphone or webcam and uploaded to a social media website – Oxford Dictionary
Our national social media campaign to raise awareness about FSHD uses the popular cultural meme of the “selfie” – a photograph that one has taken of oneself, usually with a smartphone, and posted on a social media page.
As you know, FSHD often affects the face, particularly the ability to smile, and that’s where the impetus for the campaign started.
We want as many of you as possible, whether you have FSHD or not, to share a selfie, smiling and not smiling (or smiling on the inside) and share these photos on Facebook, Twitter and Instagram using the hashtag #FSHDselfies.
Max Adler, who starred in the popular TV show “Glee” and ABC Family’s “Switched at Birth,” kicked off the campaign with us! Max’s mother and grandmother were affected by the disease and he has been one of the most vocal celebrity advocates.
Please help us spread awareness. Here’s how to get involved:
- Take a selfie using your smartphone
- Post or tweet your selfie using the hashtag #FSHDselfies (see sample tweets below)
- Encourage your friends and colleagues to do the same
- Change your social media profile image(s) to the #FSHDselfies campaign logo (right-click or control-click to download it from this email)
- Follow @FSHsociety on Twitter and Facebook
The goal of the campaign is to get folks talking about FSHD and encourage those who are unfamiliar with the disease to learn more and spread the word to others. Help us reach our goal of 5,000 #FSHDselfies!
P.S. If you don’t have a social media account, you can still help by forwarding this email and talking about this campaign to family and friends who do use social media.
SAMPLE TWEETS OR POSTS
- Proud to share my first selfie for #FSHDselfies to raise awareness for the rare incurable disease #FSHD and the @fshsociety. [insert selfie]
- I’m taking part in the #FSHDseflies campaign. To learn more about FSHD and how you can help go to www.FSHsociety.org
- Can you smile? Some with #FSHD can’t. Smile for #FSHDselfies and help the @fshsociety raise awareness for #FSHD. [insert selfie]
- More than 500K people worldwide are affected by #FSDH. Raise awareness with the #FSHDseflies campaign & learn more www.FSHsociety.org
- My [friend or family member] is affected by #FSHD. Help me raise awareness for this rare incurable disease with #FSHDselfies and @FSHsociety
- On [insert date] I was diagnosed with #FSHD. Help the @FSHsociety raise awareness and find a cure by sharing a selfie #FSHDselfies