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FDA Advisory Committee (AdCom) hears the voice of the DMD community

On September 28, 2017, the U.S. Food and Drug Administration (FDA) held an Advisory Committee (AdCom) meeting to discuss the new drug application for ataluren for oral suspension (PTC Therapeutics Inc.). This committee allows stakeholders to present additional data, information and views on treatment. At the end of this hearing, the AdCom voted that more […]

AdCom for Translarna (ataluren) by the FDA

Advisory Committee (AdCom) for Translarna (ataluren) by the FDA On September 28, the US Food and Drug Administration (FDA) will hold an AdCom meeting for PTC Therapeutics Translarna (ataluren). This committee allows stakeholders to present additional data on treatment. It is important to ensure an in-depth analysis because Translarna (ataluren) acts on a small population […]

TAKING ACTION – PORTRAIT OF DUCHENNE – WHEN LIFE CHANGES

Alex Smith CEO, Harrison’s Fund, United Kingdom In this eighth interview of our series “ Portrait of Duchenne ”, La Fondation La Force talks with Alex Smith, CEO of Harrison’s Fund, a British-based, leading charity for research into Duchenne muscular dystrophy (DMD). Alex’s life changed when his son Harrison, now 11, was diagnosed with DMD. He decided […]

Duchenne Awareness Day

Today, September 7th is International “Duchenne Awareness Day”. We took this opportunity to launch our video. Its aim is simply to raise awareness about Duchenne muscular dystrophy. The seventh day of the ninth month represent the 79 exons in the dystrophin gene. Telling as many people as possible about Duchenne Muscular Dystrophy (DMD) is the first step […]

IT’S DONE! 704 KM IN HOPE TO CURE DUCHENNE

It’s done! After completing the SSQ-Marathon Québec-Lévis this Sunday, August 28. Jean-Philippe Morand and his son Victor have cycled and ran a total of 704 KM. The father and son are on a mission to raise awareness about Duchenne. Every effort to raise awareness about this rare and devastating disease will help us facilitate access […]

ANOTHER MARATHON FOR JEAN-PHILIPPE AND VICTOR!

How far would you go for your son? For Jean-Philippe Morand and his son Victor, the answer is 704 KM. The duo completed the Ottawa Marathon in May and “La Randonnée Jimmy Pelletier” in June (620 KM of cycling). This Sunday, August 27, they’re up for another marathon, this time in Québec… The father and […]