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NF2 BioSolutions

2 weeks ago

Read on to find out why NF2 BioSolutions Vice President Gilles Atlan is doing his bit in the fight against NF2.

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My name is Gilles Atlan, and I have volunteered to be the Vice President of NF2 BioSolutions because I want my 12-year-old daughter Karen to be able to live a life free of physical and mental pain. As you can see in the video in the comment below, Karen is still feeling great but we all know that the future won't be easy.
I want to be able to look her in the eyes and tell her that I am doing all that I can to give her a future. I want her to know that her dad will never give up and that she will never have to fight this monster called NF2 alone.
As it stands, the sad truth about a rare disorder is that very few people will care about the need to find a cure for it. It is therefore up to patients and their loved ones - their parents, brothers, sisters, wives and husbands - to push forward and put in the effort to drive the need for researchers to work to help us. It is worth pointing out that there are over 7,000 rare disorders, and less than 10% of them have a cure. This has me wondering what would it take for the best researchers to work on NF2 instead of another disorder - and the answer I've found is that they will do the research if we as patients and their loved ones ask them, motivate them, support them and pressure them if we have to.
Indeed, it took me some time to realize that the best people to motivate the researchers are those directly affected by NF2; in fact it took me five years from my daughter's first diagnosis to realize this. Back then, my thinking was of a similar vein to that of many parents - that maybe the tumors won't grow, that maybe there will be a trial within the next five years using cancer drugs that will work. However, five years have passed and there is still no cure and nothing has really progressed as far as research goes. There are still no long-term treatments in the pipeline and the tumors in my daughter continue to grow.
She had a vestibular schwannoma removed from her brain successfully last year and has had two cataract surgeries, and aside from all this she has tumors in other risky locations in her brain and spine.

So then, how did I get to volunteer with NF2 BioSolutions. It all began when I got to know Dr. Nicole Henwood on Facebook last year. Dr Henwood is the mother of a son with NF2 and she rallied a group of motivated people who have decided to take active control of their destiny.
That is how I started to be actively involved with NF2 BioSolutions and began to actively develop its network and fundraising capacity.

As of today, the advancements and successes in gene therapy give us hope that the mutation that causes NF2 can be fixed, with growths being stopped through the addition of a functional NF2 gene and additionally another approach called "suicide gene" could destroy the existing tumors, to avoid surgeries . Fortunately, NF2 is a good candidate for gene therapy as it is tied to one gene, the gene is small enough to be transported by a friendly engineered virus and the fact that the tumors grow slowly will avoid the dilution of the vector. We have to research this, or perhaps other novel routes if we are to fulfill our ultimate goal of finding a true long term therapy for our loved ones.

Nicole, I thank you for having starting NF2 BioSolutions and being laser-focused on its goal. Thank you to all our volunteers for these outstanding achievements that we have worked on together. Indeed, in less than 10 month we ran a consortium of 40 researchers, we assembled virtual teams of researchers and advisors and we have convinced top gene therapy labs to focus on NF2. NF2 is now on the map of disorders in need of a cure, and we will make it being at the centre of the map ! Now, we need more support, more volunteers, more fundraisers to speed up the research. We need you because no one else will do it for us! ...