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Rare Disease Day Announcement Brings Attention to Genetic Disorder that Affects 1 in 25,000 Births

The Children’s Tumor Foundation and NF2 BioSolutions have announced a joint initiative to advance patient-focused research efforts for the neurofibromatosis type-2 (NF2) community. The collaboration, announced in recognition of Rare Disease Day, is focused on recruitment for two key resources: the NF Registry and the NF2 Biobank. The two organizations are working together to raise awareness of NF2 and to encourage robust participation in these two important tools, which will help increase scientific understanding of NF2, accelerate drug development of effective treatments, and lead to improved lives for NF2 patients. For more information…


Copy of Copy of Copy of Smiths' AnnualDue 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 Screen Shot 2020-02-24 at 12.33.46existing 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 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

Screen Shot 2019-06-30 at 9.50.38

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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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1 day ago

NF2 BioSolutions
The Children’s Tumor Foundation and NF2 BioSolutions have announced a joint initiative to advance patient-focused research efforts for the neurofibromatosis type-2 (NF2) community. Read more by clicking this link: nf2biosolutions.org/news/childrens-tumor-foundation-and-nf2-biosolutions-announce-collaboration-o... ...
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1 day ago

NF2 BioSolutions
For Rare Disease Day, we are all linked together in fighting NF2. Click this wonderful YouTube link below. To reach a cure for NF2 we need your support, donate at nf2biosolutions.org/donateLinked together video: youtu.be/Ss0KLZ0vycE ...
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4 days ago

NF2 BioSolutions
Hey hey, here's some amazing news from us at NF2 BioSolutions - especially if you're in France, Germany or Italy. Basically, we have partnered with Transnational Giving Europe, so anyone donating from these three countries can benefit from local tax laws while bringing the NF2 community closer to the light at the end of the tunnel. In short, it's practically win-win!Find out more at nf2biosolutions.org/donate/ ...
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6 days ago

NF2 BioSolutions
Don't miss our NF2 Surgical Management webinar this Sunday, Feb 28th! nf2biosolutions.org/events/webinar-surgical-management-of-nf2-tumors/ ...
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3 weeks ago

NF2 BioSolutions
Here's a bit of good news - the Food and Drug Administration in the United States has approved the first gene therapy to address early infantile Krabbe disease, also known as Globoid Cell Leukodystrophy.More can be read about it at bit.ly/3jz3qbf.Can NF2 join the ranks of disorders treatable by gene therapy? It sure can, and we'll get there with your continued support for our scientists who are all hard at work to bring our community closer and closer to the light at the end of the tunnel! ...
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1 month ago

NF2 BioSolutions
Looking for something for a special someone this Valentine's Day and want to do a good deed while you're at it? Well, look no further! From Jan 29, a bundle of original letterpress #Valentine's Day cards from 11 different artists will be on sale at nf2-biosolutions.myshopify.com/ and all proceeds will go to NF2 BioSolutions, the non-profit supporting scientific research poised to help NF2 fighters win the war against the genetic disorder. Additionally, there will be an option to also make a donation and any donation of any amount will receive a 12th card design - one that all #bridgerton fans will approve of. What is the site? As NF2 BioSolutions director and Copper Willow Press maestro Jill Velez said in an Instagram post; "follow any of these 10 designers - @pressedmallow @papelnco @aerialistpress @fiorepress @swellpress @plumecalligraphy @pressedpaper @wegomoo @presshausla @belleandunionco - and myself for more info Friday morning! Also, if anyone is a maker and wants to take part in this in the future, my next one is possibly Mother’s Day. " ...
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1 month ago

NF2 BioSolutions
A new collaboration with a researcher, a new fundraising initiative by a 13-year-old in England. New information on our NF2 sample bank. 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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2 months ago

NF2 BioSolutions
Benevity is a platform companies can use to match the donations that their employees make to a registered charity of their choice, of which NF2 BioSolutions is one. Over 600 companies are on board with Benevity and below are just some of them. In November and December 2020, more than USD$9,000 was donated by employees and matched by their companies through Benevity - so if you're looking for ways to help with our fight, why not try it out and get your company on board. Google, USAA, T-Mobile and SAP - we thank you for getting on board and supporting your employees as they help us #endNF2 through funding research into gene therapies to treat this disorder! ...
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2 months ago

NF2 BioSolutions
A total of four NF Organizations are now collaborating to fund NF2 Gene Therapy. NF2 BioSolutions, NF Northeast, NF Midwest and NF Michigan have combined forces to fund a USD$100,000 Gene therapy project at Dr. Wade Clapp’s Lab at the University of Indiana. This project will test several vectors on NF2 mice. These vectors were designed by two separate labs at both University of Massachusetts and Nationwide Children’s Hospital. The UMass project was funded last year by a collaborative USD$65,000 grant from NF Northeast, NF Midwest and NF2 BioSolutions. The project at Nationwide Children’s Hospital was funded by a three year USD$330,000 grant from NF2 BioSolutions. ...
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