Gene Replacement Therapy for NF2 is starting!
August 1st 2019: NF2 BioSolutions signed a contract in July 2019 to partially fund a NF2 
Gene 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.
June 26th 2019: Dr. Mueller of the University of Massachusetts Medical School attended NF2 BioSolutions’s NF2 Gene Therapy 
consortium 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
NF2 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
To 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
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.
Upcoming Events
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A person living with NF2 will have to go through many complex surgeries, sometimes dozens of them. Here are how some people dealt creatively with their scar.
Please share in the comment, how many surgeries you or your love one had so far .
The wins for rare diseases genetic base therapies keep rolling in !!!
www.statnews.com/2019/11/20/alnylam-givlaari-approval/
FDA approves Alnylam’s Givlaari, second-ever drug based on RNAi - STAT
www.statnews.com
The FDA has approved the second-ever drug based on a Nobel prize-winning technique known as RNA interference, Alnylam’s givosiran.#mygivingstory from Michelle White, our Georgia ambassador. As we give today, also consider giving your time to this cause. Reach out if you’d like more information about becoming an NF2 BioSolutions ambassador! #givingtuesday
Paige and her son have dozens of tumors in the brain and along the spine that are slowly shutting down nerves...
We have to stop these tumors to grow, please help us and donate to www.facebook.com/donate/1742483145885513/10217543502793482/
#mygivingstory #NF2 #cureNF #cureNF2 #genetherapy
Jill's daughter, Laurel has many tumors currently growing in her brain and spine due to NF2 (Neurofibromatosis Type 2). No therapies today can stop them growing, that's why we need to accelerate gene therapy research.
Please donate today at www.facebook.com/donate/1742483145885513 and help us on Giving Tuesday. #mygivingstory #NF2 #cureNF2 #NF2biosolutions
Thanks to your generous donations last year at GivingTuesday, we jumpstarted these two labs and support a third to cover different scientific approaches.
To accelerate the research, please donate today here: www.facebook.com/donate/1742483145885513/?fundraiser_source=external_url
If you can't donate on Facebook due country/amount restrictions, donate here: nf2biosolutions.org/donate
#NF2 #cureNF #cureNF2 #genetherapy
Dr Nicole Henwood founded NF2 BioSolutions after her son AJ was diagnosed with Neurofibromatosis Type 2, or NF2.
In less than a year, NF2 BioSolutions jump-started two gene therapy research projects and is supporting a third one. However, more funds are needed to accelerate research before it is too late for all the NF2 patients that have growing tumors.
Please donate today at www.facebook.com/donate/1742483145885513 and help us on Giving Tuesday. #mygivingstory #NF2 #cureNF2 #NF2biosolutions
Emily is living with NF2 (Neurofibromatosis Type 2). She had dozens of surgeries, radiations that are affecting her life to this very day. There is no cure today, but there can be one with your help!
Please donate today to boost gene therapy research at www.facebook.com/donate/1742483145885513 and help us on Giving Tuesday. #mygivingstory #NF2 #cureNF2 #NF2biosolutions
My daughter is living with NF2 and I am investing in her future by donating to labs that are researching a long term therapy for stopping her tumors from growing. Please donate tomorrow at www.facebook.com/donate/1742483145885513 and help us on Giving Tuesday. #mygivingstory #NF2 #cureNF #cureNF2 #genetherapy
My name is Christine, my daughter has NF2 and here is why I will donate tomorrow on Giving Tuesday. Please head to
www.facebook.com/donate/1742483145885513 to learn more.#mygivingstory #NF2 #cureNF #cureNF2 #genetherapy
I strongly encourage everyone to consider donating to NF2 BioSolutions on Giving Tuesday tomorrow
www.facebook.com/donate/1742483145885513
I know my beautiful community of Englewood in Florida has heard so much about them and so many people are now aware of what NF2 is and how damaging it can be. Any amount donated makes a LIFE CHANGING DIFFERENCE.
As many people know my life completed changed on December 5th, 2018. Last year I was diagnosed with a genetic disease that was already affecting me. Because of NF2, I have hearing loss in my left ear, tumors along my spine, migraine headaches, anxiety, and now have endless doctor appointments and MRI's to monitor my right ear, which also has a tumor that is currently sitting on my balance nerve.
My tumors can grow any time, any day. I joined NF2 BioSolutions because I believe in their mission, their values, and admire all the volunteers’ work ethics. This is a nonprofit made up of parents, family members, patients, and advocates who are trying to find a cure for NF2. They work normal jobs and then come home to volunteer for NBS in their area of specialty.
The day I joined NF2 BioSolutions, my outlook on life changed. I decided that day I was no longer going to wallow in self pity, I was going to help be apart of the solution. I joined the team that is so determined to find a cure. NF2 BioSolutions has given me a support system of people who understand first hand what I am going through. The volunteers have become like family to me.
For the first time in a long time after being diagnosed, I have HOPE. NF2 BioSolutions has helped me to continue to dream about my future. I know that this nonprofit is going to change the world by finding a cure for NF2. #mygivingstory #NF2 #cureNF #cureNF2 #genetherapy
www.facebook.com/donate/1742483145885513/?fundraiser_source=external_url
We hope you had a great Thanksgiving holiday and survived the madness that is Black Friday.
Next Tuesday (Dec 3) is Giving Tuesday, and we hope that on this once-a-year occasion, you are able to support NF2 BioSolutions.
As it stands, we have achieved so much over the last year all thanks to the work of our large team of dedicated volunteers and our donors from all over the world. Thanks to all of you, we have been able to work to fight a genetic disorder called NF2 - and this is what we've been able to accomplish thus far;
- We have created a network of NF2 clinicians/researchers and gene therapy researchers.
- We have also jump-started two labs to work on gene and novel therapies for NF2 and are currently supporting a third one that is advancing towards the trial phase of a gene therapy.
However, we can't do this alone. We need your help to advance and to open up new approaches to fighting NF2, and you can help us fight on by donating at 8am US Eastern time as Facebook will match the first few million dollars worth of donations being made.
Please do try to donate at 8am exactly. A donation link will be provided here on Facebook from Monday.
This is another gene therapy success, and this shows the future for NF2 as patients fighting the genetic disorder, their families, friends and supporters are bringing NF2 forward as the next challenge to be solved by the scientific community exploring gene therapies.
Indeed, the University of Massachusetts is one of the labs NF2 BioSolutions is working with!
www.umassmed.edu/news/news-archives/2019/10/first-evidence-of-clinical-stabilization-in-tay-sachs...
www.umassmed.edu
Preliminary data from an expanded access study of an investigational gene therapy in two patients with infantile Tay-Sachs disease indicates the potential to modify the rate of disease progression, according to an upcoming report at the European Society of Gene and Cell Therapy Annual Congress in Ba...