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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NF2 BioSolutions (NBS) board member John Manth had a busy weekend educating the NF2 community on NBS and our accomplishments. On Saturday John presented at the NF Midwest Symposium in Chicago then flew to NY City where he presented on Sunday at the NF Patient Forum at NYU Langone. John’s presentation shared information on our mission/vision, strategy, board, advisors, ambassadors, NF2 Gene Therapy consortium as well as explaining the three researchers that NBS is supporting. The NF2 patients and families who attended these two events where very excited and appreciative of the work that NBS is doing.
Thank you John for representing NBS and taking so many initiatives.
EUROPE: The slides here was presented by European Public Policy at ARM Senior Director Annie Hubert on October 15th 2019, and they show the near-term approvals of gene therapy drugs for rare diseases in Europe.
This article shows the different major novel platforms and technologies in the gene/cell therapy world.
NF2 BioSolutions wants to make sure that no new technologies are overlooked for treating NF2. With your donations we can jump-start many different approaches in parallel until we find the right ones.
Save the date and please post a comment to suggest how we could motivate people to donate! Also, please help us spread the word about our GivingTuesday fundraiser on December 3 by sharing this post. Thank you!
These slides were presented by European Public Policy ARM Senior Director Annie Hubert at the Gene Therapy for Rare Disorders Conference in London on October 15, 2019.
It shows the gene/cell therapy drugs in Europe that have been given to patients that has already been approved and reimbursed.
My name is Frederik Suter, one more year and then my life will be 17 years without and 17 years with nf2. I don't think I have to tell you which part of the two I would choose if I could. NF2 is an asshole. I've been through a lot already, wrote an autobiography about it five years ago and since then NF2 has kept trying to pull me down. There are so many metaphors in my head which put the ongoing battle between me and NF2 into pictures, for example I sometimes imagine a swamp of quicksand where I am trapped and slowly being swallowed until only my head (which still works contrary to my body) is popping out. Or like a tug-of-war where I'm slowly being pulled to the mark where I've lost although I'm pulling back with full strength.
Funnily enough the more NF2 throws at me the stronger I seem to get. So I can't really lose, can I? Well, let's say I won't give up without a fight. Sure, some day I will have to face the showdown, but then I will be the one who decides when it's over. I already made some vows with myself that when nf2 causes me this or that restriction in addition to the many I already have, then I'll call it a day. However, until then I will keep fighting and with hope, humour and humility look into the future, indeed this year some of my restrictions have been improved and I have regained some life quality back and at the moment I am overjoyed and positive. Next year maybe I'll try to get my ABI repositioned which never worked unfortunately. But third time lucky, eh?! And then there's NF2 BioSolutions(NBS) which surely give some hope, even though nf2 has caused me to become very sceptical towards research about it throughout the years. I'm very grateful that there are new initiatives happening and NBS indeed seems to be a fresh and promising approach.
My book has been translated into English and is available to order here:
frederik-suter.editionblaes.de/suerte-english/
(Shipment to the USA possible!)
From each sold copy $5 (5 €, £4) goes to NF2 BioSolutions.
Here is our October Newsletter !
If you are not signed up to receive the newsletter, please go to nf2biosolutions.org and signup at the bottom of the home page.
mailchi.mp/6fa227358d98/fighting-for-a-cure-nf2-biosolutions-october-2019-newsletter
Fighting for a cure! NF2 BioSolutions October 2019 Newsletter
mailchi.mp
On October 16, three members of the NF2 BioSolutions (NBS) team - vice president Gilles Atlan, treasurer Deian Owens and NBS United Kingdom team leader Clare Goddard – attended the 3rd Annual Gene Therapy for Rare Disorders Europe. Their goal was to bring awareness of NF2 to labs and biotech com...Amazon will donate to NF2 BioSolutions (0.5% of what you spend) if you do these 3 steps :
Step 1: Go to smile.amazon.com , sign in Amazon and scroll down
Step 2: In the search box, type “NF2 Biosolutions” and search.
Step 3: Select “NF2 Biosolutions” . That’s it , now shop on Smile.amazon.com
BAY AREA, CALIFORNIA: Big thanks to the Thoms family for the Halloween Bash 2019 fundraiser and to all the volunteers and the donors. More than $55,000 was donated to NF2 BioSolutions for boosting NF2 novel therapy research, as those who donated and came out to support the event were extremely generous
The highlight of the event was English Beat with Dave Wakeling, who rocked the house with their infectious and very danceable ska music - a definite throwback to the 80’s. After a bidding war for an 8-hour limousine ride went for $4400, the limousine company (Bauers) stepped up and offered the same deal to the second bidders, raising $8600.
Thank you to all the 2019 SPONSORS, who are;
*Varsity Painting
*A One Construction
*American Asphalt
*Bauer's Transportation
*Berding & Weil
*Cal Erectors
*Century Commercial Services
*Collins Management
*Green Valley Structural
*HAS_ Homeowner Association Services
*Heritage Bank Of Commerce
*HMC_ Homeowners Management Co.
*Jean Bates & Associates
*Kelly Moore Paint Company
*New Pipes Inc.
*PPG Paints
*Roofworks & Construction
*Sherwin Williams
*Stout Insurance
Additional Teams:
*NOMONF2
*Camille's Tumor Fighting Superheroes
* Slightly Batty Halloween Wing-Ding
Slides about the current landscape of novel therapies companies, gene/cells therapy companies and the number of gene therapy companies focusing on rare diseases. (Academia centres are excluded)
Slides presented by Annie Hubert, Senior Director, European Public Policy at ARM. October 15th 2019.
Here is a recently-shot video featuring NF2 BioSolutions founder and president Dr. Nicole Henwood. This video is captioned, and captions can be turned on by clicking the CC button in your YouTube settings at the bottom of the video.
Please subscribe to our YouTube channel and check out the other videos we have uploaded to it.
Dr. Nicole Henwood Message - NF2 BioSolutions
www.youtube.com
This is a message from Dr Nicole Henwood, the founder and president of NF2 BioSolutions. Nicole's son AJ is diagnosed with NF2 (Neurofibromatosis Type 2) and..."Lyren Lenore Grate was a writer. She was a daughter, sister, aunt, granddaughter, friend, cat mom, niece, cousin, and social justice advocate..."
Please read more about Lyren, click on link below.
donorbox.org/lyren-grate
In Memory of Lyren Lenore Grate | NF2 BioSolutions (Powered by Donorbox)
donorbox.org
Lyren Lenore Grate was a writer. She was a daughter, sister, aunt, granddaughter, friend, cat mom, niece, cousin, and social justice advocate.COLORADO, USA. On Friday (October 18) Megan Bugle celebrated an entire year of being "craniotomy free" with 150 of her family, friends and extended network.
Her goal was to raise $5,000, with all proceeds to benefit NF2 BioSolutions and she is incredibly proud to announce that she raised $13,500 - and the donations continue to pour in.
Meghan said "It is absolutely amazing to watch an entire community lock arms to help your vision become a reality, and today we are one step closer to finding a long-term treatment for NF2."
LONDON, UNITED KINGDOM: The presentation by NF2 BioSolutions (NBS) at the 3rd Annual Gene Therapy for Rare Disorders Europe was well-received by the biotech community, says NBS vice-president Gilles Atlan.
Speaking on Thursday (Oct 17) after the end of the conference, Gilles said the following;
"There is a lot of interest in the presentation about the progress of the NF2 labs we re supporting. We understand that it is important to bring in the support of biotech companies at an early stage to support the pre-clinical lab work. All in, we are continuing to put NF2 on the map!"
The conference ran from Oct 15 - Oct 17 and NBS was represented by Gilles, treasurer Deian Owen and NBS United Kingdom team leader Clare Goddard.
Gilles gave a presentation on Oct 16 titled "NF2 BioSolutions: Perspective of a Patient Advocate-Run Nonprofit, 1 Year In" at 3.45 pm which was followed by a panel discussion titled "Keeping Patients at the Centre of Gene Therapy Development" at 4pm.
