Team FSHD Cycling crosses the finish line!

And here they are, our champions! Team FSHD Cycling at the Race Across America finish line in Annapolis last night! We couldn’t be more proud, and humbled, by this incredible feat of planning, grit, athleticism, and heart. The team traversed 3,143.9 miles in eight days, braving blistering desert heat and thunderstorms. On behalf of the entire FSHD community, THANK YOU. 

New documentary tells one family’s story about FSH muscular dystrophy

FSH Society ambassador Lexi Pappas has just completed her first film documentary, based on her family’s multigenerational experience living with facioscapulohumeral muscular dystrophy. We learn how FSHD affects individual members of her family in different ways. The documentary is a powerful, personal “coming out story” about Lexi’s courageous decision to open up about her condition and why it is so important to become an advocate. The film is dedicated to her late grandfather, Edward Norris, a long-time benefactor of the FSH Society. We know he would be so proud. Thank you and kudos, Lexi!

Here is Lexi’s blog post about her documentary.

Team FSHD Cycling’s RAAM has begun!

DONATE TO HELP TEAM FSHD CYCLING’S CROSS ITS FUNDRAISING FINISH LINE!!

We are more proud than we can say to have Team FSHD Cycling embark today on the 3,000-mile Race Across America to raise awareness and funds for our shared mission to beat FSH muscular dystrophy. Thank you to all who raised funds and sent photos to “put a face” on Team FSHD Cycling’s support vehicles. Over the next 7 days, we challenge you to help us get a donation from all 50 states!! View Team FSHD Cycling’s daily location tracker.

And we're off! Track our progress on the Race Across America website. #fshsociety #raam #cycling #fshdcycling

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SHIFT Communications wins PCNE Bell Ringer Award for American Ninja Warrior Campaign

We are proud and honored to announce that our PR/marketing partner SHIFT Communications earned a Publicity Club of New England Bell Ringer Award!

A Silver Bell was awarded for our Nonprofit Communications Campaign bringing attention to two of our top ambassadors, Carden and Spencer Wycoff. Spencer participated in NBC’s America Ninja Warrior in June 2016 to raise awareness for his sister Carden, who has FSH
muscular dystrophy, and the Society. Together, the two helped to bring our mission to the show’s millions of viewers, for which we could not be more grateful. We never could have achieved this honor had it not been for their commitment to raising awareness of the disease!

We are so thankful for passionate ambassadors like Carden & Spencer, and we are honored to work with the equally passionate and talented team at SHIFT to share their stories in an award-winning fashion. We share this award with all of you!

Check out our Orange Slice Selfies Video!

Check out our brand-new Orange Slice Selfies video to find out how you can join in celebrating World FSHD Day coming up on June 20th! With the help of great supporters, video editors and others, we’ve created this fantastic video to show you how you can spread public awareness of FSH muscular dystrophy with just an orange and a willingness to be a little silly! Take a look at the video above!

We encourage you to share this blog post via Twitter and Facebook with #WorldFSHDDay to bring awareness to FSHD and the FSH Society. Please also share this post with your friends and family via email.

Don’t forget to take a picture and share your Orange Slice Selfie with us on Twitter and Facebook on June 20th! And challenge your friends to do the same!

Our heartfelt thanks to all who participated in making this video.

FSH Society Talk Radio – A chat with Chris Carrino, voice of the Brooklyn Nets

Wednesday, May 31, 2017. 10:00 pm EST / 9:00 pm CST.

LISTEN HERE!

Chris is the voice of the NBA’s Brooklyn Nets and as founder of the Chris Carrino Foundation, an outspoken advocate for FSH muscular dystrophy. We will hear his story—how he embarked on his career as a sports broadcaster, keys to success in such a high-pressure job, observations about the game—as well as his FSHD journey. How did he learn he has FSHD, and why did he choose to keep his diagnosis secret until recently? How does he manage the intense travel and demands of his job? Why did he create the foundation in 2011, and what is its mission? What’s next for Chris? Post your questions in the comments section and we’ll ask him during the show! Or you can call in and talk to him live on the air. Continue reading

Make an Impact This World FSHD Day With Our Orange Slice Selfie Campaign

The FSH Society is excited to celebrate the Second Annual World FSHD Day and join the global effort to raise awareness to FSHD this June 20th. To build upon last year’s success, 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 participating in our Orange Slice Selfies campaign. With orange as the official color of World FSHD Day, 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.

Download World FSHD Day Toolkit here.

Additionally, we encourage supporters throughout the country to reach out to their local Department of Public Works in an effort to light up notable landmarks (bridges, buildings) orange in honor of patients and families. With Boston’s famed Zakim Bridge set to be lit orange on June 20, we would be thrilled to have the country from coast to coast lit orange!

Within this year’s 2017 World FSHD Day Toolkit, you will find example 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 to light up your local landmark orange.

Please find an editable Word document of the toolkit below, and don’t forget to share your photos with us using #WorldFSHDDay on June 20! Please feel free to contact us at info@fshsociety.org with any questions.

Download World FSHD Day Toolkit here.

From our CEO, a call to FSHD researchers

Dear Research Colleagues,

The late Senator Paul Wellstone of Minnesota

As you know, the FSH Society constantly encourages the National Institutes of Health (NIH) to increase the number of grants and the number of dollars it funds on one of the most common forms of muscular dystrophy–facioscapulohumeral muscular dystrophy (FSHD)–while urging the FSHD research community to help the NIH to achieve higher levels of spending on FSHD by submitting grant applications. In fiscal year 2017, the NIH estimates funding $80 million on all forms of muscular dystrophy (source: NIH online Research, Condition, and Disease Categorization (RCDC) system). Continue reading