To see our newsletters, Press release and TV coverage click here.
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.
Read more…
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:
15-year old Ashlynn Wauchope is living life to the fullest, fighting back to take control of her life in spite of the challenges NF2 throws her way.![]()
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Ashlynn is also an ally of NF2 BioSolutions as she has graciously shared her story and allowed us to create a Donorbox in her name at donorbox.org/ashlynn to raise funds in support of scientists working to develop gene therapies to treat NF2 in a proactive manner.![]()
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As she says in her own words that; "although I have challenges of sight loss, deafness, acquired brain injuries and physical restraints before me, NF2 isn’t a disability, it doesn’t disable me from doing most things, but I have to modify and work harder to succeed."
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A new collaboration with a researcher, a new fundraising initiative by a 13-year-old in England. New information on our NF2 sample bank. ![]()
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All of this and more in the latest newsletter by NF2 BioSolutions, available at mailchi.mp/nf2biosolutions/webinars-a-tissue-bank-and-new-research-6140009
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In the United Kingdom, 13-year-old Dylan Ward is gearing up to walk 50 miles (80km) on Jan 30 to raise funds for NF2 BioSolutions and raise awareness about a damnable genetic disorder called NF2. If you're interested, you can learn more about his cause at bit.ly/3rVW3i2 or better still, hear him speak in his own words at youtu.be/1uo0C5sJBF0
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Walk for NF2
bit.ly
Help Dylan change the world! Make a donation now
Dear friends, our chapter in the United Kingdom - NF2 BioSolutions UK, which is itself worthy of support by all in the UK and beyond - is supporting one amazing young man who's fighting to raise funds to support scientific research into gene therapies for NF2. ![]()
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This young man is 13-year-old Dylan, who is working to complete his bronze Duke of Edinburgh Award. ![]()
For his skills and volunteering sections he is volunteering for NF2 BioSolutions UK so that he can raise funds for research into gene therapies for NF2 and awareness about the damnable disorder. ![]()
Dylan is doing this by is fundraising for his “Walk for NF2” on 16 and 17 January 2021. He's walking 50 miles on cold winter January days and this is a huge challenge for him. ![]()
It goes without saying that Dylan needs all the support he can get. If you can donate please do so, so that together we can get the cure that’s so desperately needed and we urge you to support him at uk.virginmoneygiving.com/DylanWard2![]()
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This is a cause very close to him as his nine-year-old brother Oscar is fighting three cranial and four spinal tumors due to NF2. Oscar's struggle has led Dylan to devote his energy to trying to make a difference for children affected by NF2 all over the world, including his brother.![]()
In his own words, Dylan says that he wants to raise awareness and funds "so that more doctors can help us get a cure. I want to help Oscar and all the other children in the world affected by NF2 so they can grow up with better lives, but I know that it won't happen without the money for research.![]()
So, I decided that I could make a difference by volunteering for the charity and raising some money while raising awareness. I've got a few other events happening later in the year too”![]()
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As his mother Joanne says; "our family’s hope is for a cure with gene therapy, so that is why we are supporting NF2 BioSolutions UK. We hope that Oscar can live the life he's meant to and he can play football with Dylan and all his friends. The two boys love listening to music & playing games on the Xbox together, but Oscar is already suffering from hearing loss due to tumors.![]()
I am proud of Dylan, he understands he can help others and change lives by volunteering."
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NF2 Butterfly Ornament - all proceeds benefit NF2 BioSolutions. Purchases shipping next week. ![]()
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copperwillow.com/nf2-butterfly-ornament
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Here's more good news on the gene therapy front, as outlined here - "A single injection of a viral-mediated gene therapy vector reduced the bleeding rate among patients with Factor IX-related hemophilia B by 91% over the course of 6 months, researchers reported.![]()
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In most cases, patients were able to discontinue prophylaxis to prevent bleeding episodes after receiving the injection, which can be performed on an out-patient basis."![]()
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Gene therapy for NF2 is an attainable future, we just have to stand together with the end-goal in mind!
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It looks like gene therapy's all set to work for sickle cell disease and beta-thalassemia. NF2 will be next, and it will happen - but we can't do it without your support!
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We are a two-year-old nonprofit that is patient-led. Thanks to your donations, we jumpstarted two labs and accelerated research at another two. Please see our latest research progress and updates. To help us support these labs and get them moving forward faster toward our next steps, please continue to donate at www.facebook.com/donate/695034994732797/![]()
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Research update: nf2biosolutions.org/gene-therapy-and-nf2/research-initiatives/research-update/
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Research update
nf2biosolutions.org
Winter 2020 Gene Addition: Dr. Meyer’s lab, Center for Therapy Center, Nationwide Children’s Hospital (Columbus,OH) NF2 BioSolutions sponsored the pre-clinical NF2 gene addition program at...
Please watch this 2-minute video and hear the girls tell you why they want to cure the NF2 rare disease and support our fundraiser to save them and all the people touched by NF2, donate today here: www.facebook.com/donate/695034994732797/![]()
These four girls - Jessica, Laurel, Victoria and Karen - have formed a bond and support each other in their journey as they fight a rare disease called NF2.![]()
In January 2020,these four young girls met for the first time. They had been socializing online for a year but were keen to meet in person, so they became the official cheerleading squad for the NF2 BioSolutions team in the Walt Disney World Marathon in January 2020 and through the four girls, different parts of the world were united at the marathon. ![]()
During this visit, the girls had the incredible opportunity to meet the very talented and dedicated scientists and researchers that are fighting so hard behind the scenes in their own marathon to develop a cure for NF2 through gene therapies. If these researchers ever needed reminding of the importance of their work, then these four girls did just that. ![]()
Tragically, these four friends collectively have over 50 tumours, and that’s just the ones the MRIs can detect. There are most likely many more tumours growing undetected on and in their nervous system, lying quietly and growing steadily – until they start to cause clinical problems – by which time it is often too late to prevent permanent nerve damage.
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Learn More
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Watch the incredible story of these four friends:![]()
www.youtube.com/watch?v=OOYBLIfDa3A![]()
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We are approaching Giving Tuesday on 12/1 and Facebook is matching donations starting at 8am EST. ![]()
Two years ago we kicked off our first large fundraising campaign. So many steps have been taken thanks to you. Lets end 2020 by funding the next step towards the end of NF2.![]()
Our Giving Tuesday Fundraiser will finance the next step of our two preclinical gene therapy programs for Neurofibromatosis type 2 (NF2), a rare disease that causes multiple brain and spine tumors children and adults. ![]()
The Meyer lab at the Nationwide Gene Therapy Center and the Flotte Lab at the University of Massachusetts need $100,000 to advance to in vivo testing of their gene therapy vectors. The experiments will be performed at the Clapp Lab at the University of Indiana.![]()
For more information, please review our research update that provides a summary of achievements over the two years since we launched our NF2 novel therapy initiative. ![]()
nf2biosolutions.org/gene-therapy-and-nf2/research-initiatives/research-update/
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NF2 BioSolutions's cover photo
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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/![]()
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Indeed, as she says; ![]()
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"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."
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