One Collective Voice: Stories from World FSHD Day 2026

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On June 20, World FSHD Day unites the entire FSHD community – individuals living with FSHD, their families, friends, and communities, and the research and clinical community –  to celebrate resiliency and raise awareness about facioscapulohumeral muscular dystrophy (FSHD). The World FSHD Alliance supports this global day of awareness by helping organizations, leaders, and advocates share resources, ideas, and activities that can be used in different countries. The aim is to create a shared sense of purpose and encourage participation through both local and global efforts. In 2026, the World FSHD Alliance is working to tell a collective story with over 70% of member countries participating. 

Beat FSHD! by BEAT FSHD! Combo

“Beat FSHD!” is a powerful call to action for global research, awareness, and solidarity in the fight against Facioscapulohumeral Muscular Dystrophy (FSHD). Created by composer and patient advocate Rami Jokinen and launched in collaboration with FSHD Finland https://www.instagram.com/fshdfinland), FSHD Europe and the World FSHD Day movement, this song unites patients, families, scientists, and supporters in a shared mission. 🎶 Sing. Clap. Stamp your feet. Rock on — and rise up for a cure for FSHD!

Coloring the World Orange 

On June 20th, over 200 buildings, signs, and local landmarks across the world will be lit up in orange.  

  • Australia: the Big Banana in Coffs Harbour, New South Wales 
  • Brazil: Christ the Redeemer in Rio de Janiero, one of the new Seven Wonders of the World, the Parliament Building, and three additional buildings 
  • Canada: Niagara Falls, Sails of Light, and 5 additional buildings and landmarks 
  • Japan: Marine Tower in Tokyo 
  • Spain: 216 sites across 45 of the 50 provinces including the Spanish Parliament 
  • United States: King & Queen Towers in Atlanta; St. Louis Planetarium; BOMA Building in Chicago; and additional sites 

Community Celebrations & Gatherings 

From picnics and hikes to dinner parties and educational events, the FSHD community will gather to share stories, raise awareness, and advocate. 

  • Canada: dinner parties and picnics scheduled in every province 
  • Finland: story sharing at summer solstice fires and gatherings, which are already lit up in orange 
  • Poland: patient/caregiver educational event on June 20 with over 40 participants 
  • Spain: accessible hike – Ruta Senderista en Parque Natural Hoces del Rio Riaza (Segovia) plus informational stands at local malls. A few interviews on television and radio are planned as well!

Media Coverage

Special Podcast Episode 

Every year, Tim Hollenback, host of FSHD Straight Talk, records a special episode sharing your stories in honor of World FSHD Day. In 2026, Tim will feature his first cast of international guests representing FSHD patient advocacy organizations around the globe. Guests including Neil Camarta of FSHD Canada and Raj Badiani of FSHD UK will share details about events in their home country and what celebrating World FSHD Day means to them. 

Social Media Selfies and Stories 

World FSHD Day offers everyone the chance to share their story and more information about FSHD to their personal social media. We invite you to take part on June 20th. Share your story in the way that feels right for you. Wear orange, raise your voice, share an orange slice selfie, and help others learn about FSHD. Together we can increase understanding and help ensure that no one feels alone on their FSHD journey. 

And, keep an eye out for educational and storytelling campaigns from:

  • Associação Brasileira de Distrofia Muscular Facioescapuloumeral (Abrafeu)
  • Spierziekten Nederland/FSHD Stichting
  • FSHD Finland
  • FSHD Polska (Poland)
  • AFM Téléton (France): Click here to view their beautiful, anime-style wall of selfies and stories
  • FSHD UK

About the World Alliance 

The World FSHD Alliance unites representatives from over 30 countries working to find a cure for, and to provide support for individuals living with facioscapulohumeral muscular dystrophy (FSHD). It was established because, together, by sharing resources, strategy, and “speaking in one voice,” we can accomplish much more in education, support, and advocacy. The World Alliance’s initiatives include: World FSHD Day, an international day of awareness, celebrated on June 20; Project Mercury, a collaborative project between advocate and pharma to increase the number of qualified clinical trials, increasing patient engagement, and maximizing on limited resources; and quarterly meetings amongst member countries. 

Media Contacts  

Oceania: 

Lorel Colgin, FSHD Global, lorel@fshdglobal.org 

Europe: 

Miriam Long: World Alliance, mwlong@fshdworldalliance.org 

Ria de Haas, FSHD Europe, Ria.deHaas@fshd-europe.info 

Canada/US: 

An Sasala, FSHD Society: an.sasala@fshdsociety.org  

Latin America: 

Rafael Colnago, Associação Brasileira de Facio-Escápulo-Umeral, rafael.colnago@abrafeu.org.br