Welcome to the website of United Parent Projects Muscular Dystrophy, the worldwide group of Duchenne Patient and Parent Organisations.
Duchenne Patient Advocates may be confronted with different challenges on a national level, but worldwide we fight for the same goal: to improve the lives of boys and men affected with Duchenne Muscular Dystrophy (DMD).
Every month, a blog on news, updates and events in the DMD field will be posted here.
I am Maria Fries, living in Switzerland and mother to twelve-year-old Mattias who has Duchenne and Hanna, 11. Mattias was diagnosed just before his third birthday. During the past nine years, we have been living with the Mattias’ diagnosis. I have learned a lot and I have tried hard to do my best to make his life as comfortable as possible. That has meant getting Mattias into a clinical trial.
Trials are too expensive in Switzerland and therefore the families must go to France, Germany or Italy so between June 2013 and June 2016, he took part in the Biomarin Exon Skipping-45 trial in Paris.
Switzerland is a small country. We have three different language regions. In the western part people speak French, in the south Italian and the rest of the people speak German. There is also a small population speaking Rhaeto-Romanic. You can imagine the challenge in this small country! There is not only the language barrier, also the mentality in the different regions makes it difficult.
When it comes to orphan diseases, each region has it owns small organizations and foundations. Let’s look at the different Duchenne organizations:
In the German speaking part, we have the Schweizerische Muskelgesellschaft (Swiss Muscle Society), which is an umbrella organization for ALL neuro muscle diseases. Duchenne patients and their families represent the largest group. The society organizes camps for kids and young people, they collaborate with other organizations who are politically active. They also have contact groups for parents and conduct events to create awareness about neuro muscle diseases. The organization also does fundraising.
Some Duchenne parents think that the society is not doing enough for Duchenne families. They set up a website www.duchenne-schweiz.ch to give the best information particularly to newly diagnosed families. This year, the association Duchenne-schweiz has been founded and in December will take part in a charity run, organized by the Schweizerische Muskelgesellschaft.
A family living close to Zürich founded a society – SOS-Duchenne – when their son was diagnosed. They mainly raise awareness at Christmas markets and other small events. On September 7th, this year, SOS-Duchenne organized a successful charity concert with a famous singer song writer for children.
In the French speaking part, there is the foundation Progena which was founded by Robert Palm and his wife after their son was diagnosed with Duchenne 10 years ago. Progena is a member of UPPMD . Progena organized the first German speaking Duchenne conference in Switzerland in September this year. In the west of Switzerland there is also ASRIM, an umbrella organization for neuro muscular diseases.
In the south, the Italian speaking organization is currently being reorganized.
Two years ago, I wanted to bring Duchenne mums together and organize an event to get to know each other. We now come together twice a year to do something nice like a boat trip with dinner or a hiking tour with lunch. Of course, we talk a lot about our sons, share experiences and give tips. And we laugh and we cry together. As mums we appreciate that we now know other mums in the same position.
I am event manager for the Foundation Progena, I was co-founder of Duchenne-schweiz and since 2015, I have board member of the Schweizerische Muskelgesellschaft. I believe that networking is the best way to achieve something. We have to start with fundraising and giving better support to the families. We have a lot of work to do in Switzerland to bring the organizations together.
Auf Wiedersehen! Au revoir! Arrivederci! A revair!
Annemieke Aartsma-Rus PhD, Professor of Translational Genetics, has written a blog on CRISPR technology. Please click here to read the blog.
On September 7, 2016 the third World Duchenne Awareness Day has taken place. The 7th day of the 9th month has been chosen to represent the 79 exons in the dystrophin gene. World Duchenne Awareness Day is initiated by United Parent Projects Muscular Dystrophy and made possible by the Duchenne community worldwide. This time more than 40 countries and 90 organizations were involved and for the second year we celebrated under the High Patronage of the European Parliament.
Social and local media
Everybody talked about WDAD: in local newspapers, on radio stations and television channels.
Duchenne parents from all over the world shared videos of their sons around the period of diagnosis. Thanks to all parents the powerful video Early Signs has been created. Early recognition of the obvious signs is the best instrument we have at the moment. Besides giving parents the opportunity for good parenting, an earlier diagnosis of Duchenne Muscular Dystrophy will allow timely access to genetic counselling, standards of care and clinical trials. Click here to watch the video Early Signs.
Duchenne parents explain why is Early Diagnosis is important. See all 13 video messages here.
On WDAD2016 Pope Francis was in Rome with the Italian Parent Project
and a WDAD t-shirt! He shared the following personal message with the community:”I send love to all the boys all over the world!”
Duchenne Balloons were released in over 18 countries, see this world map. In meetings and at conferences speakers talked about WDAD.
38 iconic buildings and landmarks across Australia turned red this World Duchenne Awareness Day to raise awareness of Duchenne Muscular Dystrophy.