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Benoît Rengade, Board Member at Telethon

In 2009, Benoît Rengade (E91) found out that his son Nicolas had Duchenne Muscular Dystrophy (DMD). A few years onwards, he got involved in the fight against rare diseases and joined AFM Telethon's board of directors. 

ESSEC Alumni: What’s your role on the AFM board?

Benoît Rengade: I started on the board in June 2015. I take part in the international commission’s work as well as in assessing hospitals’ requests for subsidies. What’s special about the AFM is what we call the “patient power”; there are only patients and patients’ families on the board.

EA: How did you decide to get involved?

B.R.: At first I went through a period where I didn’t want to see anyone, especially patients who were older and therefore more affected than Nicolas. Then, little by little, I came to terms with the illness… Getting involved in the interest group was an obvious choice for me. Joining the board was less obvious, but I came around to it, thanks to conversations with other board members who encouraged me. Now it's my way to help other patients’ families.

EA: Could you explain the goal and work of the AFM Telethon?  

B.R.: The Telethon is instrumental to the AFM. It single-handedly guarantees nearly 85% of the resources that go into financing our three major missions: curing (financing research), helping (covering health care costs, financing care centres, subsidising hospitals) and PR (raising awareness). The Telethon funds are vital for us, that’s the least you can say.

EA: What’s the AFM’s budget? What share goes to research?

B.R.: In our work, research represented a €55M investment in 2014, which is about half the total budget. Those funds went to laboratories created by the AFM, or to independent programs through a tender process. Please note that our financial report is public; you can find it on our Internet site. Transparency is a big deal to us, which is understandable given that we rely on the generosity of the public.

EA: Would you say that the funds already received have at least partly reached their goal?

B.R.: Absolutely yes… and no! On the “yes” side, I can point to two historic successes that came about in 2014: conclusive tests for Olesoxime, a neuroprotective molecule that works against infantile spinal muscular atrophy, and then the market authorisation of Atalurn, the first innovative drug used in treatment for 13% of DMD cases. These are really causes for hope. On the “no” side, there’s so much left to be done! 30 to 40% of our patients don’t even have a specific diagnosis. How can you fight an enemy when you don’t even know its name?

EA: How would you explain the success of the Telethon, which has practically become an institution?

B.R.: It’s a real wonder… The Telethon doesn’t belong to anyone though, there’s something about it that is much bigger than any of us.

EA: How can the alumni community get involved throughout the year?

B.R.: The Telethon happens once a year, but the disease is there year round, and you can help us out year round, too! Either by making a donation at Téléthon.fr or by organising an event, during the Telethon or at another time, or simply by changing your outlook: the next time you see a person suffering from a disease, speak to them as if you didn’t notice the wheelchair. That will be a first move towards a fairer society.

 

About Duchenne Muscular Dystrophy

Duchenne Muscular Dystrophy, or DMD, (the full name is Duchenne de Boulogne muscular dystrophy) is a genetic neuromuscular disorder. The gene responsible for the production of dystrophin, a protein that is an essential component in muscular development, is truncated and the body fails to produce the protein. The gene is found on the X chromosome, therefore females may be carriers but it is males who are affected. The symptoms first affect the lower limbs until the ability to walk is lost; then the upper body atrophies. The spine becomes deformed, developing a curvature; following that comes pulmonary insufficiency and the heart muscle is affected. Life expectancy today is around 30 years, which is 15 years more than when the AFM was created in 1957, thanks to progress made in patient care. 

 

From an article first published in Reflets ESSEC Magazine n°112. Click here to suscribe.

 

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