Anson Calder Adds Orange Wallet to Collection to Benefit FSH Society

Meet the newest addition to the Anson Calder collection: The Cash Wallet in FSHD Orange! In recognition of FSH muscular dystrophy (FSHD), Anson Calder designed the Cash Wallet in the official orange color of World FSHD Day to bring awareness to the disease, and to the FSH Society. A portion of sales are donated back … Read more of “Anson Calder Adds Orange Wallet to Collection to Benefit FSH Society” »

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 … Read more of “SHIFT Communications wins PCNE Bell Ringer Award for American Ninja Warrior Campaign” »

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 … Read more of “Make an Impact This World FSHD Day With Our Orange Slice Selfie Campaign” »

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: … Read more of “Into the Light Wins Three Awards at Best Shorts Film Competition” »

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 … Read more of “FSH Society Awards $541,133 in Funding for FSH Muscular Dystrophy Research” »

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. … Read more of “FSH Society Supporters Dr. Michael Kyba and Marge Brchan Share Their Story With FOX 9 Minneapolis” »

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, … Read more of “Consensus Reached to Move Forward with Formation of International Global FSHD Patient Registry” »

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 … Read more of “Thank you, Spencer and Carden!” »