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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:
***************************
*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
***************************

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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2 weeks ago

NF2 BioSolutions

Are you a NF2 fighter who's just had surgery or are you gearing up to have a surgery soon?

You can help advance the global fight against NF2 by filling up a simple form at redcap.chop.edu/surveys/?s=F9L8ED7W33 - and please do consider doing so, because by contributing your tumor to our tissue bank, you will be helping to boost research into NF2 and hopefully treatment through gene therapy.
This graphic here basically shows what will happen once you fill our form.

And if you need to learn more, you can go to nf2biosolutions.org/gene-therapy-and-nf2/open-access-nf2-tissues-cells-bank/ for more detailed information.
...

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2 weeks ago

NF2 BioSolutions

Stay home , stay safe, but if you need to go outside, follow these rules: ...

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3 weeks ago

NF2 BioSolutions

"In one case in the Medi-Cal pilot project, a newborn girl had a life-threatening irregular heartbeat, but cardiologists didn’t know the underlying cause. Within two days, sequencing detected Timothy syndrome, a rare genetic disorder that affects the heart. Doctors were able to target a medicine to control the heartbeat and then implant a pacemaker. 'That’s the kind of power these tests can provide,' says Henry Garlich, director of health care value solutions and enhanced clinical programs at Blue Shield.

Ultimately, as many as 40,000 newborns each year in the US may be candidates for this whole genome sequencing to find a diagnosis", is a fact outlined in this Wired article here at bit.ly/2x7BbfE

It might begin with genetic sequencing, but gene therapies - like the ones supported by NF2 BioSolutions - are the necessary next step and can be a reality if we stay the course and follow through
...

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3 weeks ago

NF2 BioSolutions

Due to the COVID-19 pandemic, we have no choice but to postpone our NF2 Novel Therapies consortium in Boston, which was originally set for April 3. We had 45 NF2 and Gene Therapy researchers and clinicians who were planning to attend from all over the United States and Europe.
Our planned agenda was as follows:
***************************
*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
***************************

We hope we can reschedule the meeting soonest possible once the pandemic is over. In the meantime we will continue to interact with researchers remotely.
...

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4 weeks ago

NF2 BioSolutions

We have two new NF2 BioSolutions ambassadors, Mary Sell in Iowa and Amy Meyer Williams in Kentucky. If you are from these states, do not hesitate to contact them and join the fight
against NF2!

More information on Mary is available at nf2biosolutions.org/about-us/your-local-ambassadors/usa-nbs-team/iowa/ and more information on Amy can be found at nf2biosolutions.org/about-us/your-local-ambassadors/usa-nbs-team/kentucky/
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1 month ago

NF2 BioSolutions

Two days ago, we asked you for the first three words that came to your mind when you think of NF2. We got many responses, and we put them together in a little graphic here.

All said and done, we want to bring hope to all of you by pushing hard for gene therapy to fight NF2 - and we can't do this without you. So thank you from all of us NF2 BioSolutions volunteers, for it is your continued support that gives us the energy to keep striving every day. Because of you, we won't stop until we #endNF2 together!
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1 month ago

NF2 BioSolutions

A spotlight is now shining on the hard work of our two Florida ambassadors - Lauren Hanrahan and Stephanie Ham - and rightfully so!

Thank you for all that you did in Washington DC, raising awareness about our struggle! May you move from strength to strength as we all work to #EndNF2

The article in the Englewood Sun is available at shorturl.at/mTW05
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1 month ago

NF2 BioSolutions

When you think about NF2, what are the first 3 words that come to your mind? ...

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1 month ago

NF2 BioSolutions

Below is a Rare Diseases Day post from the two NF2 BioSolutions Ambassadors from Australia, Billie Harvey and Emily Block. These two valiant NF2 fighters would like to share the following message with you;

"Rare Disease Day is February 29, and we need your direct support in our newest endeavour - establishing an NF2 tissue bank. By giving scientists direct access to NF2 tumours, it can help speed research and development of specific drugs and gene therapies to help in our fight for an eventual cure.

The images below show cell slides from two common NF2 tumours - an ependymoma and a schwannoma. Slides like these can be stored in our new NF2 Tissue/Cell Bank to help scientists in targeted, specific NF2 reasearch; something we have never had before!"

So, having said that please head to www.facebook.com/donate/218691646200995/2229635803998369/ and share what you can. Every little helps!
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1 month ago

NF2 BioSolutions

This Saturday is Rare Disease Day, and we at NF2 BioSolutions will be launching the first open-access NF2 Tissue and Cell bank (tumors, cell lines), a project that will drastically speed up research and bring in new research labs to the race in finding a treatment for NF2.

However, we cannot do this without your help - and this is why we will be launching a fundraiser totally focused on raising the funds needed to launch and maintain this bank.

So stay tuned, stay ready for Rare Diseases Day this Saturday!
In the meantime,please do drop a comment below if you have any questions.
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