1. Could you please introduce yourself?

My name is Ludivine Verboogen, I founded F101G with my husband Romain Alderweireldt, and I’m the mother of Aurélien, who suffers from Marfan syndrome.

2. Can you tell us about the 101 Marfan Genomes Project?

The P101GM project involves setting up a bioinformatics platform to cross-reference phenotypic data, i.e. complete patient medical records, with genomic data, i.e. complete genetic mapping of a cohort of 101 Marfan syndrome patients.

By cross-referencing these data, we hope to be able to better explain the enormous variability of the disease, and eventually identify protective genes whose effects we could try to reproduce with drugs. I’ll give you a concrete example : we take two individuals with Marfan syndrome who have the same mutation but very different symptoms: one is very mildly affected and the other is severely affected. By studying their complete genetic map, i.e. their genome, we can see that, in those who are not very affected, there is a gene that is active and protects them from the Marfan mutation, which is the same.

If we manage to identify this protective gene, and if we find that this protective gene produces a certain protein, we could try to create a drug reproducing the effects of this protein, and give it to the most affected patients.

3. Why did you create the 101 Genomes Foundation?

When he was born, our son Aurélien was diagnosed with Marfan quite early on. We realized that medical solutions did exist, but my husband and I would like to enable all Marfans patients to have better living conditions by giving them access to treatments and medication much earlier in their lives – we’re targeting children too – which could enable them to avoid major heart, back and eye surgeries, and which could really help reduce the severity of their symptoms.

4. What do you expect from the 101 Marfan Genomes Project?

My husband’s and my dream is to advance research by 10 years. A geneticist explained to us that, by creating this platform, we’ll be providing researchers and scientists with a database to which they don’t have access today, enabling them to make a 10-year advance in research..

From a research point of view, Marfan disease is not an orphan disease, as there are many researchers working on it around the world. Scientists’ interest may be explained by the fact that this is a cardiovascular disease, and that cardiovascular diseases are unfortunately among the biggest killers. So it could be interesting to study Marfan syndrome for other diseases too. Here, we provide researchers – all researchers, whatever their country, language or university – with a free, secure access database.

Some of these researchers have already been working on Marfan syndrome for years. Once they have access to this new information, as some of them may already know what they’re looking for, they could get confirmation of their intuitions. Our dream is that this will enable us to bring out new drugs, hopefully fairly quickly.

5. What do you see as the key factors in the Project’s success?

We’ve assembled a fantastic team of scientists, and that’s fundamental. These are highly specialized people. The two reference centers in the world for Marfan syndrome are Ghent and Baltimore – which has very close links with Antwerp. So in our misfortune, we were lucky enough to be in Belgium, close to hyper-specialized and hyper-competent centers in the field. We also need an excellent bioinformatics platform, and are still negotiating with partners at the cutting edge of new technologies. We also need to communicate well with the outside world, and try to keep our message simple and accessible, because today’s new technologies really do open the way to personalized medicine, and to offering different and better ways of treating people. And of course, we need to raise funds to finance this platform.

Ludivine Verboogen,
Founder of F101G

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