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Gene Replacement Therapy for NF2 is starting!

August 1st 2019NF2 BioSolutions signed a contract in July 2019 to partially fund a NF2 Kathrin MeyerGene therapy Pilot Pre-Clinical Study at the Abigail Wexner Research Institute at Nationwide Children’s Hospital by Dr. Kathrin Meyer, who is serving as the Principal Investigator.

Read more…


June 26th 2019:  Dr. Mueller of the University of Massachusetts Medical School attended NF2 BioSolutions’s NF2 Gene Therapy 16-chris-mueller.jpgconsortium in Boston on March 29th. Being moved by the impact of NF2, Dr. Mueller decided to start a gene therapy pilot study to determine if his lab’s gene therapy platform could be a good candidate for tackling the NF2 mutation. The advantage of his platform is its ability to silence the mutated gene and then add a healthy one. Dr. Mueller, assisted by Dr. Karin Meijboom, will be financing the development of the gene therapy NF2 vector for the pilot. Once manufactured, it will be tested on NF2 in order to determine efficiency. NF2 BioSolutions will facilitate the collaboration between the NF2 experts and Dr. Mueller’s lab.

This is just the beginning, there is much more to come!!! We need your continuing support as we shine the spotlight on NF2. Our goal is to collaborate with several leading gene therapy labs and share findings as we go to increase our chances of finding a long term solution for NF2.

Take a look at the impressive Mueller lab (the site is not yet updated with his new NF2 focus).


March 29th 2019:  NF2 Gene Therapy Consortium

56403785_2297907090452213_2851512097295040512_oNF2 BioSolutions organized the first NF2 Gene Therapy Consortium where participated more than 40 biotech executives, researchers & clinicians from NF2 or leading Gene Therapy labs. Click here for more informations

 


Buy merchandise to support research

Screen Shot 2019-06-26 at 17.41.19To buy merchandise, click here to see all the choices of t-shirts, cups, magnets… Fifty % of sales go to NF2 BioSolutions.

 

 


Article on WebMD about Nicole Henwood, founder of NF2 BioSolutions

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Mom Blazes Path to Cure for Son’s Rare Disease

Click here to read the article in WebMD about Dr Nicole Henwood, president of NF2 BioSolution.

 

 

 

 

 


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2 weeks ago

NF2 BioSolutions

NF2 STRONG!!!
This past weekend, I asked my 12 year old daughter, Victoria, how it makes her feel to be diagnosed with this heinous condition called NF2.
Her reply?

“God is using me because I am strong, and I can help other people get through similar situations.”
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2 weeks ago

NF2 BioSolutions

NF2 BioSolutions President Nicole Henwood is currently running the half-marathon at Disney Orlando with many other NF2 BioSolutions supporters, like Lauren Hanrahan, Stephanie Ham and their crew.
Through this event, NF2 BioSolutions sold 40 bib tickets and got many fundraising campaigns rolling!
Go team !!!
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2 weeks ago

NF2 BioSolutions

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!
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