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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.

 

 

 

 

 


Upcoming Events


 

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3 days ago

NF2 BioSolutions

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
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6 days ago

NF2 BioSolutions

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."
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1 week ago

NF2 BioSolutions

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!
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2 weeks ago

NF2 BioSolutions

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!
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2 weeks ago

NF2 BioSolutions

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?
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3 weeks ago

NF2 BioSolutions

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!
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1 month ago

NF2 BioSolutions

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)
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1 month ago

NF2 BioSolutions

Roland 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
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