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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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3 days ago

NF2 BioSolutions
We are working on creating a directory of NF2 BioSolutions recommended clinics and doctors. If you are happy with your NF2 clinic or NF2 doctor please share their details in the comments below. ... See MoreSee Less
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1 week ago

NF2 BioSolutions
Thinking of doing a good deed to commemorate your birthday?Well, why not set up a donation drive in support of NF2 BioSolutions - something that has been done by many people in the past! All funds received will be used to continue the fight against #NF2.For instructions on setting up a fundraiser, please visit our website: nf2biosolutions.org/get-involved/how-you-can-raise-donations/your-facebook-donation-campaign/ #endnf2 #neurofibromatosistype2 #nf2biosoultions ... See MoreSee Less
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2 weeks ago

NF2 BioSolutions
We'd like to hear your experiences with radiosurgery in the comments.#NF2 #endNF2 #nf2biosoultions #neurofibromatosistype2 #radiosurgery ... See MoreSee Less
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3 weeks ago

NF2 BioSolutions
NF2 BioSolutions was founded in July 2018 with the goal of fighting back against NF2 and we won’t stop until we save our children and ourselves! Join us by volunteering and/or donating to advance research studies to the next phase. Every dollar received in donations is carefully spent and put towards accelerating NF2 research.Volunteer: nf2biosolutions.org/get-involved/to-be-an-nbs-ambassador/Donate: donorbox.org/gene-therapy-nf2 ... See MoreSee Less
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4 weeks ago

NF2 BioSolutions
NF2 BioSolutions would like to invite you to participate in a study with the purpose to develop automated 3D volumetric measurements of the NF2 vestibular schwannomas from the patients’ MRIs. Visit our website for more information: nf2biosolutions.org/gene-therapy-and-nf2/research-initiatives/nf2-3d-volumetrics/ ... See MoreSee Less
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4 weeks ago

NF2 BioSolutions
Hello everybody!We are working on creating a guide to newly diagnosed patients, families, and parents looking for answers after receiving the diagnosis.We'd love to have your help with answering some questions in the comments: * When you (or your loved one) first received the diagnosis, what questions did you have?*What information do wish you would have found when you first received the diagnosis?*What information do you think should be more accessible?If you have any thoughts, ideas and suggestions we'd love to hear from you! ... See MoreSee Less
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1 month ago

NF2 BioSolutions
The 20th European Neurofibromatosis Meeting will be held in Manchester UK in October 2022. Our very own Dr. Evans (board member of NF2 BioSolutions UK & Europe) and Dr. Kalamarides (NBS Scientific Advisory board) will be speakers at this event.Manchester has a world-leading reputation in neurofibromatosis research and NF2 BioSolutions is sponsoring research there.More details on: www.convenzis.co.uk/events/neurofibromatosis-european-meeting-manchesterVisit the following links to learn more about our initiatives in UK and Manchester:nf2biosolutions.org/news/webinars/webinar-nf2-immunotherapy-tumor-infiltrating-lymphocytes-tils/nf2biosolutions.org/2021/12/01/my-nf2-biosolutions-phd-journey-grace-gregory/#NF2 #endNF2 #nf2biosoultions #nf2biosolutionsuk #neurofibromatosistype2 ... See MoreSee Less
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2 months ago

NF2 BioSolutions
The 4th Avalon Invitational Offshore Fishing Tournament – Fish for a Cure has concluded successfully. More than $45K was raised in this year’s tournament, adding to a total of $103,000 over 4 years! Thank you to Kevin Dougherty, his wife Catherine, all the volunteers and a special shout out to the sponsors that made this possible. The funds raised by this initiative have been and will continue to be used in the pursuit of advancing novel therapies to tackle NF2.For more information about the event visit: nf2biosolutions.org/events/avalon-invitational-offshore-fishing-tournament-fish-for-a-cure/ ... See MoreSee Less
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2 months ago

NF2 BioSolutions
We at NF2 BioSolutions would like to congratulate our Scientific Advisory Committee member Krizelle Alcantara and thank her for her outstanding efforts at the Children's Tumor Foundation 2022 NF Conference in Philadelphia. At the annual Conference, Krizelle shared her NF2 story *and* also won the second place award in the Basic Science category for her poster titled "In Vitro Modeling of Neurofibromatosis Type 2 (NF2) to Explore Potential Therapies in the Context of Patient-Specific Mutations".A grateful NF2 BioSolutions thanks you again, Krizelle and wishes you strength, wisdom and good health as you resume your efforts at the Meyer Lab at Nationwide Children's Hospital in Columbus, Ohio! ... See MoreSee Less
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2 months ago

NF2 BioSolutions
By launching Merlin Therapeutics, Vibe Bio and NF2 BioSolutions are creating a different, community-driven approach to help rare disease patients access the capital and resources needed to develop therapeutics. This unique approach makes treatments economically and scientifically viable, and gives patient communities unprecedented ownership over the results. Take a look: www.vibebio.com ... See MoreSee Less
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2 months ago

NF2 BioSolutions
NF2 BioSolutions's cover photo ... See MoreSee Less
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