Author Archives: Chel Wolverton

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 with any questions.

Download World FSHD Day Toolkit here.

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.

FSH Society Awards $541,133 in Funding for FSH Muscular Dystrophy Research

Boston-based Non-profit Awards New Grants to Facilitate Search for a Cure

BOSTON – April 5, 2017 – Today the FSH Society, a world leader in combating facioscapulohumeral muscular dystrophy (FSHD), announced it has committed $541,133 in funding to five research projects that aim to break new ground in the search for a treatment and cure for FSHD. These grants follow the Society’s record breaking $1.36 million awarded in total research funding in 2016.

“These grants are a testament to the dedication of researchers within the FSHD community committed to understanding and solving how FSHD works through high quality peer-reviewed research” said Daniel Perez, President and CEO of the FSH Society. “With these grants we look to build upon our record-breaking success in 2016, which would not have been possible without the generosity and sustained support of donors, Society management and staff, our Board members and volunteers.”

The following proposals submitted in August 2016 were approved: Continue reading

FSH Society Supporters Dr. Michael Kyba and Marge Brchan Share Their Story With FOX 9 Minneapolis

Over the weekend, supporters of the FSH Society Dr. Michael Kyba of the University of Minnesota and patient Marge Brchan shared their amazing story with Leah Beno of FOX 9 Minneapolis.

To watch the broadcast video clip, click here.

After being diagnosed at 19 years old, Brchan has battled the effects of FSHD most of her life. “It was very hopeless,” said Brchan. “They knew very little about the disease. There wasn’t anyone focusing on the disease. Basically, each year you find you lose more and more ability to lift, to walk.” Continue reading

Consensus Reached to Move Forward with Formation of International Global FSHD Patient Registry

Newly Formed Facioscapulohumeral Muscular Dystrophy Consortium Aims to Consolidate More than 13 Patient Registries in Effort to Accelerate Research on Rare Disease

BOSTON – (February 22, 2017) – Today the FSH Society, a world leader in combating facioscapulohumeral muscular dystrophy (FSHD), announced that with the FSHD Champions, an international alliance of FSHD patient advocacy organizations, a consensus has been reached to move forward with the vision of an international global FSHD patient registry. The goals of the registry will be to accelerate research to understand and treat FSHD, and empower patients to gain insights from the data about their condition and improve their health and quality of life. Continue reading

Thank you, Spencer and Carden!

This week, Spencer Wyckoff competed on NBC’s “American Ninja Warrior” to raise awareness and funds for the FSH Society. Before taking the course, Spencer and his sister, Carden, described their family’s experience with FSHD. If you missed it, watch a recap of their inspirational story here.

Carden created this video to thank their supporters and to encourage everyone to take part in World FSHD Day on June 20, 2016.

Thank you, Spencer and Carden, for letting us be a part of your journey and for bringing FSHD awareness to millions of Americans!

The Truth Hurts, but I Can Bear It

The following essay was written by Zabrisa, a 16 year old FSHD patient who lives in Arizona.


Zabrisa Zelinksi – FSHD Patient

“Are you strong enough? Are you really sure you can do this, you’re not too weak?” “You’re such an inspiration for chasing your dreams.” “Smile, Zabrisa!” “You look so weird.” “Your ears–what are those things in your ears?” “Can you hear me now?” “So Zabrisa, your future?”

I’ve gone through an awful lot for the 16 years that I’ve been alive. Diagnosed with an uncommon muscle disease at 1 ½ years old, I had challenges and difficulties served to me on silver platters. I never liked thinking of myself as “disabled” nor did I ever think anything was wrong with me. I was just a person who happened to have a muscle disease. I didn’t let myself think about it; how different I was from the rest of them, how I’d always have to work a little harder to get where I’m going in life. I listened to the doctors rattle off facts about atrophy and degeneration of muscle tissue and scapular fusion surgery but never paid it much heed. I’d deal with it when I got there. Well now I’m getting there and it’s scary. Continue reading

FSH Society’s International Meeting to Bring Together Patients & Researchers From Around the World to Explore New Insights on Rare Disease

The FSH Society, the Massachusetts-based charitable foundation that has transformed the science of a little-known disease, facioscapulohumeral muscular dystrophy (FSHD), today announced its Biennial International Network Meeting. The meeting will be the one of the largest gatherings of FSHD patients, clinicians and researchers providing two days of immersive learning and community-building. The event will be held August 16-17, 2014 at the Westin Boston Waterfront hotel in Boston, Mass. Continue reading