The Barth France association (www.barthfrances.fr) was created to raise awareness of the illness known as Barth Syndrome. Please take a few minutes to read this message.
The illness known as Barth Syndrome is a rare genetic disorder that is believed to be severely under-diagnosed. Only a few hundred cases have been diagnosed globally. The main symptoms include cardiomyopathy and an absence of white globules. In recent years, an association in the United States has been working actively to raise awareness of the disease and we decided to extend their initiative by relaying the message in France through the non-profit making Barth France association after discovering that our son, Raphaël, now two years old, also has the disease.
We decided to promote the association by creating a sports club for all those who would like to combine sport with some charity work and fundraising. This year, our members will be able to take part in different competitions (10km, cycling races, marathon, triathlons, etc.). The highlight of the year for the association will be its participation in the "Ironman France" event (a triathlon comprising 3.8km of swimming, 180km of cycling and a marathon) with a 2-person team composed of Edhec alumni.
Today we are looking for partners so as to develop our awareness-raising activities, promote research via the funding of national and international research programmes, and develop communication based on education and care programmes for families affected by the disease.
We are therefore asking for donations... but also and above all, we are appealing to your personal and professional networks. If you work in a company that has a foundation, or if you would like to develop communication based on human values, our association would be delighted to develop partnerships and other events with you.
Thank you for your help!
Philippe MANNES (GE 2001) and Florence MANNES (GE 2000)
associationbarthfrance@orange.fr
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