Who we are
Co-foundator and Chairman
My youngest son was diagnosed with Duchenne Muscular Dystrophy in 2006, when he was 5 years old . Two years later, I have created Progena Foundation with my ex-wife Huguette Palm, in order to take part to the international Duchenne Network. During two years, my son took part to a clinical trial in France (exon’s kipping), stopped very early unfortunately.
I’ve got 30 years of experience as entrepreneur and I am a member of board of directors in Switzerland and Europe. I took the opportunity to broaden my network internationally and to meet experts working in the Duchenne Muscular Dystrophy field, so that Switzerland can participate to the international efforts against this terrible disease.
I have taken the initiative to create the Swiss Registry for Neuromuscular Diseases in 2008 in collaboration with the Swiss Téléthon.
In 2009, I took part to the first Treat-NMD conference in Bruxelles and proposed to organise the second 4-day international conference in Geneva in 2011 which attracted more than 400 attendees from the whole world. Since then the Treat-NMD conference is hold every two years.
In 2015 with Maria Fries, the idea of organising the first Swiss Duchenne Conference in German germinates and the first one in 2016 met a great success. So it encourages us to organise the second one two years later – and since then, every two years! This was possible thanks to the attendees and to the support of our sponsors and I am deeply grateful!
In 2007 when my son was nearly 3 years old, he was diagnosed with the Duchenne Muscular Dystrophy. At that time, very few information was available about this disease. Thereby and also to informed my family and friends in Sweden on how to live with this disease, I have been inspired to create www.mattias.ch in German and Swedish. Few years later, I’ve opened a Facebook page “duchennemama” which counts over 2700 followers.
My son took part to two clinical trials abroad. This was a rewarding experience for us even if it has not always been easy to manage.
When I met Robert Palm, I had the opportunity to participate to several international Duchenne conferences as a patient representative and I met a lot of involved people: parents, patient representatives, researchers, doctors and representatives of pharmaceutical companies.
In 2014, I followed a training in conference management in the aim of organising a german Duchenne conference in Switzerland. I wanted to give the opportunity to parents and other interested people to learn more about the Duchenne Muscular Dystrophy and offer them a network plateform.
Between 2015 and 2018, I was a comity member of the Schweizerische Muskelgesellschaft.
With my son, I could talk about the life with a Duchenne Muscular Dystrophy during a meeting with Roche and Sarepta companies.
I have participated to the patient advisory committee of PTC Therapeutics and of Santhera Pharmaceuticals.
I am also a member of the data monitoring committee of the TAMDMD clinical trial (Tamoxifène).