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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

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6 days ago

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We have already 47 fighters pledging to raise/donate $700, we need 53 more fighters. Today we need $71k more to reach the goal of $106k to start the adaptive cell therapy tumor-infiltrating lymphocytes (TIL). If we are 100 fighters raising $700 each, we will reach our goal. Please signup to be one of the 100 fighters and raise/donate $700. Sign up here: forms.gle/m31ZErpFBdxJcd4i8 ... See MoreSee Less
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2 weeks ago

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NF2 Biosolutions presents their first WORLDWIDE VIRTUAL 5k Run/Walk Event! Gather up your friends or accomplish it alone! 🏃‍♂️🏃🏃‍♀️Run or walk a 5k at a place of choice on Sunday, May 22nd-Sunday, May 29th, 2022 to support NF2BIOSOLUTIONS. Register: www.givesignup.org/Race/PA/Community/ChasingtheCureforNF2Invite your friends and family and post your picture on social media when you have completed your 5k and use the hashtags: #NF2BIOSOLUTIONS #chasingthecurefornf2 ... See MoreSee Less
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3 weeks ago

NF2 BioSolutions
We have already 40 fighters pledging to raise/donate $700, we need 60 more fighters. Today we need $71k more to reach the goal of $106k to start the adaptive cell therapy tumor-infiltrating lymphocytes (TIL). If we are 100 fighters raising $700 each, we will reach our goal. Please signup to be one of the 100 fighters and raise/donate $700. Sign up here: forms.gle/m31ZErpFBdxJcd4i8 ... See MoreSee Less
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3 weeks ago

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3 weeks ago

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So, why should you run (or perhaps walk) with us on May 22? Here's what Chantelle Nobis - a parent to a NF2 fighter - has to say;"Here is my why…. I am walking for those children and adults that cannot walk right now due to NF2. For those that are being robbed of running out on to the playground due to another surgery or missing another life event because of recovery.When I think of my “why” for this event I think of this video of my daughter a few years ago after 3 leg surgeries, removing an insane amount of tumor and finally being able to get out of a wheelchair she had been in for months, out of a restrictive brace, and was able to start “walking”. What’s your why?"Register here: www.givesignup.org/Race/PA/Community/ChasingtheCureforNF2 ... See MoreSee Less
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2 months ago

NF2 BioSolutions
Here's a solid three cheers, a "hip-hip-huzzah" for NF2 BioSolutions UK & Europe and a successful charity fundraiser they pulled off at a hotel in Nottingham, UK earlier this month! All in, 65 people attended and a total of £4740 was raised from the event. In the words of one of the organizers - NF2 fighter and NF2 BioSolutions UK Chief Operating Officer Joanne Ward - this is how it went;"We had welcome drinks on arrival and guests were treated to amazing tricks from our magician.There was a raffle online and tickets were also sold on that night by my sons Dylan and Oscar. We also had a very successful bottle tombola that was organised by my next door neighbours and friends Phil and Sue Following this, we had a two course meal and delicious cupcakes for dessert. After that we then drew the star prizes in our raffle followed by an auction of some very special prizes and then held a heads-and-tails format sports quiz which was great fun.The evening was then completed with a disco until the early hours!"And on the support received, this is what Joanne had to say;"We had support from so many people and others had travelled far and wide to us and we are truly grateful for all the support shown and we hope everyone thoroughly enjoyed themselves. It was lovely for those who help our charity to finally meet in person and meet other NF2ers."All in, thank you for your work to raise awareness, raise funds and advance the cause to #endNF2! ... See MoreSee Less
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3 months ago

NF2 BioSolutions
We have raised 35k from different sources so far for the Adoptive Cell Therapy with Tumor-Infiltrating Lymphocytes Project! Help us reach our goal to jumpstart this new approach.We appreciate your continuous support!Never Forget 2 live with hope#EndNF2 #immunotherapy #neurofibromatosis2 #NF2Biosolutions #raredisease #Rarediseaseday ... See MoreSee Less
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3 months ago

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Today and always we are linked to fight against NF2! ... See MoreSee Less
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