Category Archives: Blog

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.

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.

The Moving Story of George Pollock’s quest to Race Across America

Board member George Pollock, who is racing across America this June to raise awareness and funds for FSHD, was featured in his high school’s magazine.  In the article, George discusses what gave him the idea to participate in the race, what keeps him up at night worrying, and what he hopes to come out of the race.  Read it here.

Source: Perspectives Spring 2017.

2017 Donor Impact Report is here!

“In this life-changing storm, it feels good to have someone like you reach out to us so quickly and competently.” – Alex and AC Hoffmann, parents

When my mother, Carol, was diagnosed with facioscapulohumeral muscular dystrophy (FSHD) in the late 1950s, she was told she had only five years to live. As appalling as we find this today, knowing that most people with FSHD will live a normal lifespan, back then most physicians knew next to nothing about the condition.

Five years passed, and Carol noticed she was still very much alive. Years later, when the FSH Society was founded, it became part of our mission to make sure no patient ever goes through a similar experience. At the FSH Society, we researched facts about FSHD and provided accurate information, validated by our own experience as patients. For years, Carol was the voice on the phone for all who sought help and comfort. My mother passed away in 2012, but her spirit lives on in the Society’s mission to inform and empower all of us with FSHD. Continue reading

World FSHD T-shirts are here!

World FSHD Day is right around the corner and we know you want to be ready to raiseWorld FSHD Day t-shirt awareness.  The Society’s World FSHD Day t-shirts are here in the official color: orange.  Get into the spirit of World FSHD Day however you can!  Get creative!  Paint your nails orange, put up orange lights near your house, participate in our orange slice selfie campaign, use orange chalk to draw the World FSHD Day logo on your driveway! Dress up your friends in the official t-shirt and do a flash mob at the mall! The possibilities are endless.  Share whatever you do to mark the day with us on our Facebook page, Twitter, and Instagram, using #WorldFSHDday. Unite with FSH Society members all over the world as we raise awareness about Facioscapulohumeral Muscular Dystrophy.  Buy your t-shirt here!

 

Picture of Trisha Sprayberry

My Boston Adventure: traveling solo with my wheelchair

Written by Trisha Lynn Sprayberry
Las Vegas, Nevada

My adventure began late Wednesday night, November 9, 2016. My fiancé, Erin, had dropped me off at the airport. With my suitcase in hand and a kiss to send me on my way, I was headed to Boston on a red-eye flight. I was attending my first patient conference, hosted by the FSH Society, and their inaugural #CureFSHD gala. It was at the grand Westin Copley Place Hotel in Boston, Massachusetts.

Continue reading

Into the Light Wins Three Awards at Best Shorts Film Competition

The FSH Society is proud and honored to have been recognized for 3 awards from the 6th Annual Best Shorts Film Competition for our short film documentary, Into the Light. Honors were presented to Directors Jonathan Williams and Paula Aguilera, and included:

  • Award of Merit: Disability Issues
  • Award of Recognition: Documentary Short
  • Award of Merit: Public Service Programming / PSA

Into the Light features the powerful story of high-school senior Sarah Geissler, who is living with FSHD, and her experience with FSH muscular dystrophy, a rare genetic muscle-weakening disease that affects an estimated 1 in 8,000 people. Along with Geissler’s personal journey, the film chronicles the rise of the FSH Society and its successful efforts to fund research leading to the discovery of FSHD’s genetic cause. In creating this documentary, it was our hope to share the empowering stories of patients who have taken matters into their own hands to seek a better future for themselves and for fellow patients.

The Best Shorts Competition is an international film competition striving to create opportunities for filmmakers of all levels to gain recognition. Each year, thousands of entries are judged and scored by highly qualified film and TV industry professionals, with select winners having gone on to win Emmys and Oscars. Our entry was, no doubt, amongst a variety of those by talented filmmakers and we’re so pleased to be chosen and hope to raise awareness of FSHD with this recognition.

Accessibility hacks, mobility aids, and tips (Part 2 of 3)

Written by Paul Shay
Groton, Massachusetts

Grab Bars. In conjunction with my half-steps, we added a conventional grab bar in the doorway to our garage. My wife came up with the idea of using a six-inch, black wrought iron drawer pull in the doorway in our house that contains the step from the entry area to the main level. It works very well, and it looks much less obtrusive and “institutional” than a standard grab bar.

For our shower, we purchased a couple of 12-inch suction cup-mount grab bars and installed them on the walls. They are intended only for assisting in stepping into and out of the shower, and for help with balance―they can’t bear your full body weight. The best thing about them is their portability, thanks to the suction cup-mounting system. They fit handily into a suitcase and make it possible to use hotel rooms that lack installed mobility aids in conjunction with:

Folding Toilet Frame. Essentially a portable set of armchair-like padded rails, this has proven to be one of our best purchases. It is fully height adjustable and fits behind the seat of any commode without mounting hardware. We have been able to toss it in the trunk and take off on trips without having to make an ADA-compliant room reservation.

Stairlift. By far our largest purchase to date has been the installation of a stairlift in our home. With our master bedroom and my office on the second floor, access was becoming a serious issue. We were able to buy a gently used unit with a factory warranty directly from Stannah for $4,300 (including the use of an Angie’s List coupon). While that is not an insubstantial amount, it beat having to move! The unit has a battery backup feature in case of a power failure, and remote controls that allow the chair to tote bulky/heavy objects up and down the stairs

aTyr Pharma releases results of early-onset FSHD trial

SAN DIEGO, April 24, 2017 (GLOBE NEWSWIRE) — aTyr Pharma, Inc. (Nasdaq:LIFE), a biotherapeutics company engaged in the discovery and development of Physiocrine-based therapeutics to address severe, rare diseases, today announced promising clinical results from its Phase 1b/2 003 trial assessing the safety and potential activity of Resolaris™ in patients with early onset facioscapulohumeral muscular dystrophy (FSHD).

Read the full press release here.