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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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5 hours ago

NF2 BioSolutions
Thank you so much for your donations! Your generosity has been exemplary, we really appreciate your trust and will honor it by never stopping until a cure is found.If you haven't been able to donate yet and wish to contribute, you can still do it using any of the links below:www.facebook.com/donate/506216111466759/donorbox.org/nbs-giving-tuesday-2022Our fundraisers will remain open for the month so please help us share and donate to get to our goal! ... See MoreSee Less
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23 hours ago

NF2 BioSolutions
Dependence to treatment is one of the things NF2 fighters live with and this is only a way to manage the tumors. NF2 BioSolutions is funding several gene therapy approaches to find a cure for NF2.Help us reach that goal! Your donation can help us: www.facebook.com/donate/506216111466759/donorbox.org/nbs-giving-tuesday-2022 ... See MoreSee Less
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1 day ago

NF2 BioSolutions
We want to shout out fellow NF2 fighter and long-time supporter Devon Payette! He has organized for the 3rd year a 24-hour game stream. This year he and his friends raised $6,334.59 CAD!!!Devon, we can't thank you enough for your trust in our work and the amazing work you do year after year. You are truly an example to us allplausenhook went live on Twitch. Catch up on their Special Events VOD now. ... See MoreSee Less
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1 day ago

NF2 BioSolutions
NF2 can take our precious independence alongside many other things, that is why we need urgently to find a cure!Please help us achieve this by donating: www.facebook.com/donate/506216111466759/If you cannot donate using Facebook, please us this link: donorbox.org/nbs-giving-tuesday-2022 ... See MoreSee Less
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1 day ago

NF2 BioSolutions
WE NEED YOUR HELP TO END NF2!The donation link: www.facebook.com/donate/506216111466759/We are fundraising to continue the fight against NF2 brain and spine tumors! Your donations can help us make a difference in the lives of our children and families.The funds will benefit the work of Dr. Zhou at Yale at developing nano particles to deliver a healthy NF2 gene to stop tumor growth. Help us reach our goal of 100k which will enable us to support this lab's efforts, this includes:Therapeutic development (Jiangbing Zhou, Ph.D.) Non-viral gene replacement therapy Immune checkpoint blockade therapy Pyroptosis-induction therapy Disease modeling (Yong-Hui Jiang, MD, PhD, Jiangbing Zhou, PhD) iPS and organoid modelsWith your support, NF2 BioSolutions has launched and is supporting several novel therapy approaches to treat NF2 tumors (Schwannomas, Meningiomas, Ependymomas). The fight is far from over, please help us get to our goal! ... See MoreSee Less
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1 day ago

NF2 BioSolutions
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1 day ago

NF2 BioSolutions
The research projects we support have three main aims: stopping new tumor formation, stopping tumor growth or destroying existing tumors. Learn more today at 4:00 pm ET/9:00 pm GMT on our webinar. Register here: nf2biosolutions.org/sponsored-researchSupport us by donating here: www.facebook.com/donate/506216111466759/#endNF2 #NF2 #neurofibromatosistype2 #nf2biosolutions ... See MoreSee Less
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2 days ago

NF2 BioSolutions
Please help us spread the word to reach our goal! Together we will find a cure for NF2 brain and spine tumorsShare our fundraiser with your family and friends by following these instructions: #NF2 #endNF2 #neurofibromatosistype2 #nf2biosolutions #NeverForget2livewithhope ... See MoreSee Less
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5 days ago

NF2 BioSolutions
Registration to our November 29th webinar is still open.Link: nf2biosolutions.org/sponsored-research/On Giving Tuesday we will fundraise to jumpstart a new research project at Yale on Dr. Zhou's lab. ... See MoreSee Less
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6 days ago

NF2 BioSolutions
We are thankful for the unwavering support you have shown us this past 4 years, this journey wouldn't be same without you. Throughout the darkness NF2 can bring, you are the light that helps us keep going. ... See MoreSee Less
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1 week ago

NF2 BioSolutions
We firmly believe that sharing can help lighten the burden that NF2 entails so we want to provide this opportunity to the families affected by NF2.We are organizing a support group for parents of young kids between the ages of 0 - 12 years old. If you are interested in enrolling, please fill out this form: forms.gle/LaHCuo9gFRmCNVE19The meetings will be held virtually using zoom and will take place the first weekend of every month. ... See MoreSee Less
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1 week ago

NF2 BioSolutions
Our lovely NY ambassador, Chantelle Nobis, has organized a new fundraiser: Amelia's Army Candle Fundraiser. Link to order: oh-sew-vinyl-creations.square.site/ameliasarmyMia Bella candles offers all natural palm wax candles that are clean burning and made in the USA. They are made right in Wilkes Barre, PA! They are $25 per jar and $8 is being donated to NF2 Biosolutions. Candles can be shipped directly to you (cost based on location and determined by USPS) or you can pickup in Camden, NY. Stock up on these great candles for you or give them as the perfect Christmas gifts! All will be in before Christmas. Thanks for supporting our cause. ... See MoreSee Less
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