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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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2 hours ago

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23 hours ago

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Hey friends! Did you know that many companies offer Corporate Matching Programs to double the impact of their employees' donations to non-profits like NF2 BioSolutions? It's an easy way to make your contribution go further!If you've donated to NF2 BioSolutions recently or are planning to, take a few minutes to check with your employer to see if they have a Corporate Matching Program. It's a great way to make an even bigger impact on the fight against NF2.Let's join forces and maximize our impact! ... See MoreSee Less
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1 week ago

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Exciting news! NF2 BioSolutions is sponsoring Grace Gregory's work on a groundbreaking study. The study, published in the Journal of Clinical Neuroscience, sheds light on the efficacy of cochlear implantation in treating patients with neurofibromatosis type 2 (NF2), a rare genetic disorder that affects the nervous system. Check out the article here: www.sciencedirect.com/science/article/abs/pii/S1521661623000669?dgcid=coauthor#NF2BioSolutions #neurofibromatosistype2 ... See MoreSee Less
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2 weeks ago

NF2 BioSolutions
Scott Bradd, Paul Hollingshead, and John McCormack are cycling from Whitehaven to Tynemouth, crossing the Lake District and the Pennines. 140 miles in 5 days from Coast to Coast, over some of the steepest hills in the country. All donations will benefit NF2 BioSolutions UK & Europe.This fantastic challenge is inspired by John's nice, fellow NF2 fighter and Youth Ambassador Olivia Goddard.Support this amazing work here: www.peoplesfundraising.com/fundraising/coast2coast4livvie ... See MoreSee Less
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2 weeks ago

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The recording of our "Vision Manifestations and Eye Treatments in NF2" webinar is now available with captions!You can access it here: wp.me/Pa0xDd-1Ou ... See MoreSee Less
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3 weeks ago

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3 weeks ago

NF2 BioSolutions
Rare Disease Day is here and we have an exciting opportunity for you to make a difference in the fight against NF2. We're calling on all of our USA NF2 fighters to help us by signing up to donate blood for the immunotherapy approach project at Dr. Meyer's lab at Nationwide Children's Hospital. Sign up here: forms.gle/bjP5ny7td8nXukKd7NF2 BioSolutions will cover all the expenses, however, each blood collection costs $75. If you're interested in contributing, you can donate that amount to help us fund this important research. This is only for those located in the United States.We started organizing this project last year, and now we're finally ready to launch it. If you signed up to donate blood last year, there's no need to do it again. Let's come together as a community to support this groundbreaking research and move closer to finding a cure for NF2! #NF2BioSolutions #RareDiseaseDay #nf2fighters #DonateBlood ... See MoreSee Less
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3 weeks ago

NF2 BioSolutions
Last call! Our virtual webinar on vision and ocular manifestation in NF2 is happening tomorrow, Tuesday, February 28th at 2:00 pm Eastern / 7 PM London time. But don't worry, there's still time to register and learn from our expert panel of Dr. Gareth Evans, Dr. Ali Yagan, and Dr. Srilakshmi Sharma. Discover the latest insights on vision manifestations and eye treatments in NF2 patients. This is a great opportunity for anyone living with NF2 or caring for someone with NF2. Register now wp.me/Pa0xDd-1Ou and join us for an insightful session. See you there! ... See MoreSee Less
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3 weeks ago

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4 weeks ago

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Attention everyone! Are you living with NF2 and concerned about your vision? Join us for an informative webinar on Tuesday, February 28th at 7 PM London time to learn from our esteemed panel of experts including Dr. Gareth Evans, geneticist; Dr. Ali Yagan, surgeon and neuro-ophthalmologist; and Dr. Srilakshmi Sharma, ophthalmologist. Don't miss out on the opportunity to hear the latest information on how to manage and monitor your vision. Register now: nf2biosolutions.org/nf2biosolutions-webinars/webinar-vision-manifestations-and-treatments-in-nf2-... Help us share this post with anyone in the NF2 community who could benefit from this valuable event. We hope to see you there! ... See MoreSee Less
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4 weeks ago

NF2 BioSolutions
Congratulations to Krizelle Alcantara for being selected and winning the Outstanding Researcher Award for 2022 at Nationwide Children's Hospital! Krizelle's exemplary job performance and embodiment of NCH values are truly remarkable, and we are proud to see her dedication and hard work recognized with this prestigious award.Krizelle's contributions to the translational NF2 program at the Meyer Lab, including her work in gene therapy and other therapeutic approaches, are making a significant impact in the field. Her advocacy and ambassadorship for NF2 patients are also inspiring and show her commitment to making a positive difference in people's lives.We are grateful for Krizelle's dedication and congratulate her on this well-deserved recognition. We are fortunate to have her as part of the NCH and NF2 BioSolutions team and excited to see what the future holds for her and her groundbreaking research. Congratulations again, Krizelle! ... See MoreSee Less
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1 month ago

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Though Rare Disease Day is patient-led, everyone, including individuals, families, caregivers, healthcare professionals, researchers, clinicians, policy makers, industry representatives and the general public, can participate in raising awareness and taking action today for this vulnerable population who require immediate and urgent attention#endNF2 #NF2awareness #neurofibromatosistype2 #NF2support #nf2 #nf2family #nf2warrior #LetstalkNF2#nf2charity #nf2cure #nf2treatment #nf2gene #nf2chromosome22 #nf2trials #nf2diagnosis #nf2lifeexpectancy #nf2prognosis #nf2research #nf2ismyteam #nf2awarenessday #nf2journey#rareaware #RareDisease #RareGeneticConditions #RareResearch #Share4Rare#Genetics #GeneticResearch #RareDiseaseDay #raredisorders#charity #research #health #NF2SWN ... See MoreSee Less
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1 month ago

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Join the fight against NF2 and help advance research toward a cure. Donate your tumor tissue to our biobank during your next surgery. Learn more here: wp.me/Pa0xDd-1zO#NF2Awareness #Biobank #HopeForNF2 #nf2 #hopefornf2 #nf2biosoultions ... See MoreSee Less
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1 month ago

NF2 BioSolutions
Join us for a virtual webinar on Vision Manifestation in NF2! Our expert panel, including Dr. Gareth Evans, Dr. Ali Yagan, and Dr. Srilakshmi Sharma, will provide you with the latest information on how to manage and monitor your vision. The webinar will take place on Tuesday, February 28th at 2:00 PM Easter/ 7:00 PM GMT and will have live captions for those who need them. Register now at wp.me/Pa0xDd-1OuHelp us spread the word to help others in the NF2 community benefit from this valuable information. We can't wait to see you there! 💪 ... See MoreSee Less
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