1. can you introduce yourself?
My name is Michel Verboogen, I am the President of the F101G and I am also the grandfather of Aurélien. In life, I'm a medical specialist in psychiatry.
2. can you explain to us what is the project 101 genomes Marfan?
The P101GM is a project that compares phenotypic data, that is, the medical characteristics of a patient to the analysis of a genome, that is, the entire gene map available in an individual. What has actually advanced in the current research because the quick and easy getting of these genomic maps is a fairly recent event.
3. Why did you agree to be part of the Scientific Committee of the project 101 genomes Marfan of the Fondation 101 Génomes ?
It is not scientifically that I am here. I remember very well the phone call of Romain when he asked me to participate in this work that he was going to undertake that seemed to me completely colossal at that time but I had already prepared myself internally, I had decided to answer Yes if he asked for help. I'm mostly here as a father and grandfather. Ludivine and Romain launched this project that I found and that I always find fantastic and I said that I would help them with all my soul, with all my heart and with all my strength. That's how I see myself in this project. Besides, they didn't need me so much because I saw them studying genetics, the ethical and computer components that surround this project and I was completely amazed by how they accumulated in particular the knowledge Scientific.
4. it is a project that touches you personally, what are your expectations and your hopes in relation to the project 101 genomes Marfan?
Obviously, any medical research is important and here it is really important to us because it concerns the family. I hope wholeheartedly that the research will move forward quickly. And I am hopeful because when I meet the researchers and see their dynamism and enthusiasm, I think that it will give results fairly quickly. I hope that the research will advance quickly for all people with rare disease obviously and especially for my grandson.
5. unanimously, the interviewees admire the energy invested by Romain and Ludivine in this project. I suppose you feel that too?
Their energy amazes me. I would never have imagined that. At first, when they explained to me what they wanted to do, I said to myself: " My God, this is a colossal task! Then I saw them advancing at their own pace with an incredible dynamism because you have to know that their son takes a lot of time too, there are many medical visits, a lot of care to give. They have found the time and energy to give to this project.
It is a project that requires a lot of knowledge and good enough intelligence because there are many things to understand, medically speaking, there is a lot of things to understand to be able to discuss with these scientists of high flight... And there are other areas too, apart from the medical, there is ethics, legal, computer science and then financial, there is a whole financial struggle to lead, although there I was very pleasantly surprised by the generosity of many people at the place where I practice or in institutions or in the family, everyone has been there.
It is a relative who has triggered the process a bit. We had the idea of launching the project and then someone, without notifying anyone, deposited a sizeable sum in a Bank for the project. When Romain and Ludivine were warned, they said it was a starting signal, a trigger for the project and that there was no time to lose!
6. for people who do not realize what Marfan's disease is, could you explain what it entails on a day-to-day course?
It's a disease that affects a lot of systems. There is the cardiovascular system which must be monitored very regularly especially the heart and especially the aorta that dilates, so every three months, this dilation of the aorta must be measured to see if there is no evolution too fast.
At Aurélien it is the bone problem that is the most complex now, there is the development of a fairly important scoliosis that needs to be corrected by physiotherapy sessions and a whole series of corsets and plasters and also later by the surgery. Scoliosis is such that it starts to compress the lungs and the heart, so you have to do something.
There are eyes, it is not the most serious now, Aurélien must wear glasses with corrective lenses quite important but the eyes should be supervised also because we can have movement of the lens later.
And then the problem of ligaments also, it is called hyperlaxity i.e. the ligaments are too soft, too elastic, which makes the individual at risk to make sprains or strains later. So Aurélien wears ankle boots that support his ankles.
So there is a lot of care to give, there is medical equipment to find, there are notices to ask because it is a rare disease so doctors are not necessarily familiar with Marfan syndrome. I, for example, I vaguely remember studying it in studies but then we forget. It really takes chance to take a patient to your practice so that you can review the scientific information about this disease that we normally lose sight of as in all rare diseases.
7. What is the key element for you that the project 101 genomes Marfan is important for Marfan patients? What about other rare diseases?
It is our wish that it extends to other diseases. But that will depend on the financial and the possible involvement of other patient associations, if we collect more funds, we could spread to other diseases since they are families of diseases, many of which concern the heart.
Here, for example, at the Scientific Committee meeting today, we talk a lot about Cardiology because if there is a dissection of the aorta, one can have a sudden death. The most serious is cardiac monitoring, the other problems can be followed more attentively. Finally, I'm passionate about what's going on.
At the same time, it's a sad story for our family but at the same time, it's an exciting story that opens up to us to be able to stimulate research like that. And I would like it to extend to other rare diseases, it is my dearest wish, that it may be a pilot project that extends to other diseases and to other countries.
In any case, as it's gone, it's gone on wheel hats, that's for sure, it was surprisingly fast and that, I'm glad. But there is scientific complexity, legal, consent, computer and financial complexity because it requires work to contact people, to make themselves known to raise funds. All this, Romain and Ludivine have done very well, they do not hesitate to get in touch with many people, to involve a lot of people, they dare to go talk, they dare to fetch high. Their audacity in this area forces my admiration too.
8. do you have a conclusion to add?
I am optimistic for three reasons compared to this project:
- The dynamism and enthusiasm not only the project holders but also the researchers who have partnered with us. And I thank them very much because they are there, and well there they come from Paris and several Belgian universities.
- We are in the air of time with the Genome: since I entered this world through the Foundation, I realize that in the scientific journals and even in the media, we talk a lot about the genome and that there are projects around the world, in England, in Dubai , Iceland, etc. I see it's moving a lot.
- The Generosity I meet, large structures, medium structures and individual.
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