FSH Society Announces Third Annual World FSHD Day, Taking Place on June 20, 2018

The FSH Society is excited to celebrate the Third Annual World FSHD Day and join the global effort to raise awareness to FSHD on June 20, 2018. To build on our successes of the past two years, we’re calling upon you—our biggest supporters—to spread the word!

We ask that you join us along with members of FSHD Champions in building on the success of our Orange Slice Selfies campaign. With orange as the official color of World FSHD Day, and a common symptom of FSHD being the loss of the ability to smile, we’re asking that supporters post a photo of themselves to social media using an orange slice in place of their smile with the official hashtag #WorldFSHDDay.

In addition to our Orange Slice Selfie Campaign, we have created this video, “What’s stopping you from achieving your dreams,” for you to share with your friends, family, and others who are curious about FSHD.

You can raise further public awareness by reaching out to your local Department of Public Works to light up notable landmarks orange in honor of patients and families. Boston’s Zakim bridge will light up orange in honor of the day, and we’d love to include other landmarks on this list! Additionally, we encourage you to write to your state and local governments to issue a proclamation recommending that the day be observed in an appropriate manner by the people. For more information and tips on how to present this ask to your local officials, please access our event toolkit.

Over the past few years we’ve made impressive strides globally that have brought us closer to our collective goal of better treatments and ultimately a cure for FSHD, but we are just at the tipping point! We need you to help us raise awareness for future efforts in order to ensure that FSHD patients and families know they are not alone and we are accelerating the development of treatments and empowering our community in these efforts.

Download the World FSHD Day Toolkit here.

Within this year’s 2018 World FSHD Day Toolkit, you will find more information on World FSHD Day, along with an FAQ sheet on FSHD, sample social posts to share your selfies, an email template to share Orange Slice Selfie photos with reporters at your local newspaper, and materials to assist in contacting your local Department of Public Works.

Don’t forget to share your selfies on June 20th! Please feel free to contact us at info@fshsociety.org with any questions.

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