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To see our research initiatives news click here
To see our webinars explaining the science behind the projects we are supporting click here
Due to the COVID-19 pandemic, we had to postpone our April 3rd, NF2 Novel Therapies consortium in Boston.
We had 45 NF2 and Gene Therapy researchers and clinicians that were planning to attend from all over USA and europe.
Here below was our agenda:
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*Welcoming statement +NF2 BioSolutions updates
*Patients perspectives – living with NF2
*Guests introduction (per group)
*Merlin targeted gene-based therapy approaches to NF2:
1. Clinical advances in CNS-directed gene therapy. From target to drug.
2. Current molecular understanding of NF2-associated Merlin mutations and their impact on protein function. Panel discussion.
3. Data Present/Plans from Nationwide group – Dr Meyer
4. Data Present/Plans from Mueller group – Dr Meijboom
5. Data Present/Plans from Dr. Castellano/Dr. Blanco
6. Group Discussion: Challenges/Milestones/Timelines
*Merlin-independent cell- and immuno-based therapy approaches to NF2:
1. Clinical advances in cell-based and immuno-based therapies.
2. Data Present/Plans from Gary Brenner and Sherif Ahmed + discussions
3. Discussion: Challenges/Milestones/Timelines
*Testimony living with NF2 + Coffee Break
*Cementing the basis for research and clinical studies through collaborations: Tumor bank, Biomarkers, Animal models and Natural History
1. Human Schwann Cell Model Systems for NF2. + Group discussion
2. Tissue Bank Kick off Discussion/stakeholder/partnership commitments + Group discussion
3. NF2 Animal models landscape. + Group discussion
4. Natural history study: NIH in action+ Group discussion
5. Discussion: Challenges/Milestones/Timelines
*New Approaches
*Next Steps
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We hope we can reschedule the meeting asap once the pandemic is over. In the meantime we will continue to interact with the researcher remotely.
April 3rd 2020: Kickoff of the first Open-Access NF2 Tissue/Cell bank to accelerate 
existing research and attract new labs into the race of curing NF2. Today it is very complicated for a research lab to have access to NF2 tumors (frozen/fresh), cell lines and genome sequencing data. This initiative will solve the access problem, we are going to collect tissue sample from many surgeons, performing analysis on them and share the data as well as the tissues. NF2 Cell line will be created as well and shared. For more info go here.
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
Click here to Follow us on Facebook and don’t miss our updates:
Our South Africa Ambassador Christine is updating the banner for our YouTube page. She is in need of headshots of the heart and soul of our fight to end NF2; she is looking for headshots of our honored NF2 warriors.
Can you help? If you can, please send your photos to
bargainbasket2@gmail.com
Thinking of doing something different for Thanksgiving, perhaps something that'll make a difference for a community of people around the world?
Well, look no further as NF2 BioSolutions Georgia Ambassador Michelle White has an amazing suggestion. Please watch her video to find out how buying non-toxic beauty products from her will fund research that'll help her and many others beat NF2!
100% profits goes to NF2 BioSolutions. Shop at www.beautycounter.com/michellewhite/
Indeed, as she says;
"Did you know the US has not passed a major federal law governing the cosmetics industry since 1938? Beautycounter takes safety seriously and that is why over 1,800 ingredients are never used in their products. Help me get safer products into the hands of everyone and support NF2 BioSolutions at the same time! 25% - 35% of my sales is donated directly to NF2 BioSolutions (exact % depends on the sales total).
For those in the USA or Canada, shop the Black Friday sale now through November 29th and get 15% + Free shipping on orders over $50. Please reach out to Michelle White (michelle@nf2biosolutions.org) with any questions or for product recommendations that meet your specific needs."
NF2 v Beauty Products Toxicity - Michelle White's Fundraiser Beautycounter
100% of the profits are donated to NF2 BioSolutions to fight the rare disease NF2. To shop for non-toxic care products and support the research against the r...Our chapter in the United Kingdom - NF2 BioSolutions UK - have a brilliant idea; if you decided to donate to charity this year instead of sending Christmas Cards, NF2 Biosolutions UK would love you to consider donating to our eCards campaign if so!
We guarantee 100% of your donation will be used in our mission to advance gene therapy as a effective way to treat and ultimately cure NF2.
Do head to bit.ly/3pO0jz5 to find out more!
Ladies and gentlemen, boys and girls of all ages, here is an excellent idea from our chapter in the United Kingdom - NF2 BioSolutions UK.
In this 'new normal', we could all stand to do a good deed or two - and when you help NF2 BioSolutions, you'll be helping advance research into gene therapies that have the potential to be game-changers for the lives of thousands upon thousands of people worldwide!
In 2018 and 2019, our Giving Tuesday fundraisers were what started us moving forward four different pre-clinical research programs focused on long-term therapies for NF2.
Now on December 1 2020, we need your support once again in order to get these projects moving faster. Can we count on you, please?
NF2 Holiday Pampered Chef Fundraiser!!
You’re invited to a Pampered Chef party! Mark your calendar and invite a friend or two! Get ready to learn recipes and tips to make meals that fuel your lifestyle with some of Pampered Chef’s best products. Don’t miss out on the fun!Just two days left to order and get your holiday shopping done for a good cause! Pampered Chef has amazing products and 20% of all sales go directly to NF2 research! Please help us end NF2.
www.pamperedchef.com/party/nf2fundraiser
NF2 Holiday Pampered Chef Fundraiser!!
You’re invited to a Pampered Chef party! Mark your calendar and invite a friend or two! Get ready to learn recipes and tips to make meals that fuel your lifestyle with some of Pampered Chef’s best products. Don’t miss out on the fun!Wexner Medical Center Performs First Gene Therapy Brain Infusion For Parkinson's Disease
wexnermedical.osu.edu
For the first time ever, neurologists and neurosurgeons at The Ohio State University Wexner Medical Center and The Ohio State College of Medicine have performed a novel gene therapy brain infusion to treat a patient with Parkinson’s disease."For the first time ever, a team of neurologists and neurosurgeons at The Ohio State University Wexner Medical Center and The Ohio State College of Medicine has performed a novel gene therapy brain infusion to treat a patient with Parkinson’s disease."
Yes, this gene therapy came out of the same place that is researching gene therapies to fight NF2 - but they need our support if gene therapies against NF2 are to see the light of day.
Basically, the Meyer lab at this institution - run by Dr. Kathrin C. Meyer - will use a gene addition approach (adding a healthy NF2 gene) to potentially stop or slow tumor growth and help prevent new tumors from forming, and NF2 BioSolutions is committed to supporting this research
Wexner Medical Center Performs First Gene Therapy Brain Infusion For Parkinson's Disease
wexnermedical.osu.edu
For the first time ever, neurologists and neurosurgeons at The Ohio State University Wexner Medical Center and The Ohio State College of Medicine have performed a novel gene therapy brain infusion to treat a patient with Parkinson’s disease.Having a birthday soon? Well why not help those fighting NF2 develop new weapons - weapons that stand a good chance of winning the war against the genetic disorder!
Indeed, it's very easy to do so and a grateful community of people around the world will thank you for your act of kindness. Just click on www.facebook.com/fund/NF2BioSolutions/ to find out how!
Here's a link to a captioned video of our most recent webinar - and it's about the importance of donating your skin tissue, blood, saliva and tumors to the NF2 Bio-Bank and how it can benefit ALL of us!
The webinar basically has all you need to know about the NF2 Bio-Bank that NF2 BioSolutions launched in collaboration with CBTN (Children Brain Tumor Network) at CHOP (Children Hospital of Philadelphia).
Webinar: NF2 Bio Bank, You can advance NF2 research
nf2biosolutions.org
NF2 Bio Bank: You can advance NF2 research by donating tumor tissue – Oct 24, 2020 . Watch the video. Learn about the importance of donating your skin tissue, blood, saliva and tumors to th...It is TOMORROW ! Register here to our zoom webinar with Q&A:
zoom.us/webinar/register/WN_cjOYEVykTgK_yzv2dF0VUA
Saturday 11am EST - 4PM GMT (London Time)
Our friends in Great Britain - Nerve Tumours UK - have come out with something new that we think is quite exciting!
Basically, Lipspeaking supports deaf and hearing-impaired people to see the speech they cannot hear. The Lipspeaker provides clear lip pattern to make it easier to understand what is said.
Do surf to nervetumours.org.uk/news/how-to-use-lipspeakers-support-for-those-affected-by-hearing-loss to find out more!
How To Use Lipspeakers – Support For Those Affected By Hearing Loss
nervetumours.org.uk
Frances Harris at Bridge Lipspeaking shares how lipspeaking can help those with hearing loss or total deafness caused by NF2Roland Thoms, dad of a daughter diagnosed with NF2 and great supporter of NF2 BioSolutions, is organising this special online Halloween event on the 24th of Oct at 730 EST time with CTF.
It seems like a lot of fun!
To register: www.ctf.org/halloweenbash
***NF2 Bio-Bank Webinar Saturday October 24 11:00 am EST*********
Please join us and the brilliant Adam Resnick PhD to learn about how and why should contribute to the only open-access NF2 Bio-Bank. This is a DO NOT MISS event!
Children's Brain Tumor Network is advancing research for all brain tumors and we are thrilled to partner with them to end NF2.
nf2biosolutions.org/events/webinar-nf2-bio-bank-you-can-advance-nf2-research/
Webinar: NF2 Bio Bank, You can advance NF2 research
nf2biosolutions.org
NF2 Bio Bank: You can advance NF2 research by donating tumor tissue – Oct 24, 2020 11:00 AM Eastern time (US and Canada) – 16:00 London time Learn about the importance of donatin...