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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

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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 days ago

NF2 BioSolutions
Support our NF2 Month Awareness Fundraiser, an urgent call to action to halt the destructive path of NF2. We need YOU to help us make a difference today because time is running out. Together, we can take a crucial step further toward clinical trials and bring hope to individuals battling NF2.Click here to donate using the link in our bio.The goal of this fundraiser is clear, to support the pre-IND gene therapy phase for NF2. By advancing this groundbreaking treatment, we can pave the way for a future where NF2 is no longer a devastating force in the lives of those affected. But we can't do it alone. We need the collective power of our community to make it happen.NF2 research doesn't just benefit those directly affected by this debilitating condition. It extends beyond cancer research, as NF2 gene mutation can happen in some types of cancers. By supporting NF2 BioSolutions, you are not only making strides in treating NF2 but also contributing to the broader fight against cancer.#EndNF2 #NF2Awareness #nf2awarenessmonth ... See MoreSee Less
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2 days ago

NF2 BioSolutions
🎥🌍 Missed our latest webinar? Don't worry! We've got you covered. The recording is now available on our website: bit.ly/3pUOdsDDive into the latest advancements presented by talented Ph.D. students Adam P Jones and Grace Gregory, sponsored by NF2 BioSolutions UK & Europe. Discover the dominant immunological pathways within NF2 tumors and gain insights into the immune microenvironment of NF2-related vestibular schwannoma.📢 And here's the best part: We have subtitles available in English, Spanish, German, Chinese, Portuguese, Hebrew, and Italian!Don't miss out on this valuable resource. Watch the webinar recording now: bit.ly/3pUOdsDStay informed, empowered, and connected with the NF2-SWN community!#NF2BioSolutions #WebinarRecording #NF2SWNResearch #MedicalAdvancements #SubtitlesAvailable #StayInformed ... See MoreSee Less
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3 days ago

NF2 BioSolutions
You can contribute to the fight against NF2 while sharing your cherished family recipes with us. Join us in creating an extraordinary NF2 Community Cookbook!Enroll here: forms.gle/uqRdXyRTZWVGfuYh9🍴 Share your recipes: We are looking for your most beloved recipes that have been a part of your family's journey. Whether it's a comforting meal, a delicious dessert, or a special dish passed down through generations, we want to hear from you!📖 Share your stories: Along with the recipe, tell us a brief story about how it has played a significant role in your family's life with NF2. Your experiences and connections make the cookbook even more heartfelt and relatable.🤝 Make an impact: By participating, you'll be making a difference in the fight against NF2. All proceeds from the cookbook's sales will directly support NF2 BioSolutions.📚 Ready to contribute? Simply fill out our enrollment form with your recipe, story, and permission to use them in the cookbook.Enroll here: forms.gle/uqRdXyRTZWVGfuYh9Let's celebrate our culinary traditions, and support the fight against NF2. Together, we can make a difference, one recipe at a time! 🌍💙#NF2Community #NF2BioSolutions #FamilyCookbook #RecipesThatMatter ... See MoreSee Less
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4 days ago

NF2 BioSolutions
Are you looking to connect with the NF2 Community? We have two exciting opportunities for you!Join our supportive network and gain access to a wealth of knowledge, resources, and a caring community that understands the unique journey of raising a child with NF2. Share experiences, ask questions, and receive invaluable support from fellow parents who have been there and can offer guidance along the way. Together, we can navigate this journey with strength and resilience.Enroll now in the NF2 Parent Support group by clicking the link below: forms.gle/Bq7J5gteoon3kWwo7Additionally, we encourage you to mark your calendars for July 30th at 10:00 am ET/3:00 pm BST, for the Young Adults with NF Webinar. The webinar this year will be purely to empower, inspire and motivate young adults with NF2 age: 18+Secure your spot in the Young Adults with NF Webinar by registering through the link below: bit.ly/3pYqlElDon't miss out on these incredible opportunities to connect, learn, and find support within the NF2 community. Together, we can make a difference! 🌟#NF2BioSolutions #NF2SupportGroup #ParentSupport #YoungAdultsWithNF ... See MoreSee Less
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5 days ago

NF2 BioSolutions
🌍 Exciting Announcement! 🌍We are thrilled to share some amazing news with our incredible community! Now, our webinars are available with subtitles in multiple languages! 🌟🌍We believe in inclusivity and accessibility, and our goal has always been to connect patients with researchers while raising awareness about NF2. With this latest development, we're taking a significant step forward in reaching a wider audience and spreading our mission across the globe. 🌐💙Starting today, you can enjoy our webinars with subtitles in Spanish, Italian, French, Chinese, Hebrew, Portuguese, and German! No matter where you are, you'll have the opportunity to engage and learn from our expert speakers, sharing their valuable insights and advancements in NF2 research.These webinars are a fantastic resource for patients, families, and the entire NF2 community. Plus, we have some fantastic news – our webinars are entirely FREE of charge! However, we kindly ask our audience to support our NF2 Day Fundraiser by making a donation. Your contributions make a tremendous impact on our ongoing efforts to raise awareness and find a cure for NF2. 💪🎗Link to donate: www.facebook.com/donate/635818465119539/565622742352824Click the link below to access our webinars:nf2biosolutions.org/nf2biosolutions-webinars/#NF2BioSolutions #Webinars #Inclusivity #NF2Awareness #NF2Day ... See MoreSee Less
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6 days ago

NF2 BioSolutions
Don't miss out on the latest updates and inspiring stories in our May Awareness Month newsletter from NF2 BioSolutions. Dive into groundbreaking research news, be moved by a heartfelt story from one of our Sustainer Circle members, discover our parent and young adult support groups, and stay up-to-date on our fundraising efforts. Together, let's make a difference in the fight against NF2! Read the newsletter now: mailchi.mp/nf2biosolutions/nf2-biosolutions-may-2023-newsletter #nf2awarenessmonth #endNF2 #NF2awareness ... See MoreSee Less
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1 week ago

NF2 BioSolutions
Steevy Yarborough our amazing Nevada Ambassador has advocated for her city to proclaim May 22nd ad NF2 Awareness Month! Join us in celebrating this monumental step toward awareness. You are incredible Steevy!! ⭐️⭐️⭐️⭐️Mayor Lawson proclaimed today, May 22, 2023, as NF2 Awareness Day to spread awareness and offer our support for those affected by this rare genetic condition. Neurofibromatosis Type 2 causes tumors to form in the brain, spine and nerves. Because NF2 is so rare, research is severe underfunded. Join us in spreading knowledge, fostering understanding and advocating for advancements in research and treatment and be sure to show your support by coming out to the March the Marina walk on July 8th. #SparksProud #EndNF2 ... See MoreSee Less
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1 week ago

NF2 BioSolutions
🔬✨ Join us on NF2 Day to support our mission against NF2! With your help, we've made significant progress in our research and preclinical studies. Your support can make a significant impact in advancing our therapy for NF2. Donate now: www.facebook.com/donate/635818465119539/Now, we're fundraising for the crucial Pre-IND Phase. By donating, you'll help us:1️⃣ Prepare the pre-IND meeting package2️⃣ Submit a pre-IND meeting request3️⃣ Engage in a pre-IND meeting with the FDA4️⃣ Seek clarification through pre-IND written feedback5️⃣ Address FDA's feedback and make adjustments6️⃣ Prepare a comprehensive IND application7️⃣ Submit the IND application for FDA review#NF2BioSolutions #NF2Day #NF2Awareness #endNF2 ... See MoreSee Less
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1 week ago

NF2 BioSolutions
Our Webinar has started, click this Zoom link to join: zoom.us/webinar/register/WN_5zEclt6qQpeMNFCuIf5E0QIf you can't attend but would like to get the recording directly to your email as soon as it's available, please write a comment below and we will contact you privately to collect your email. ... See MoreSee Less
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1 week ago

NF2 BioSolutions
Did you know that the 22nd May is World NF2 Awareness Day? As today is all about spreading awareness and education of adults and children who are living with or are affected by NF2 we thought we would share Olivia's article with you again. We really loved chatting to 21 year old Olivia for our third edition of #RarityLife, she lives with Neurofibromatosis type 2 (NF2) and shared some really honest insights into her life, her experiences and her new role as the Youth Ambassador for NF2 Bio Solutions. You can read her article on page 72-77 here:www.samebutdifferentcic.org.uk/raritylife#RarityLife #RareDisease #NF2awareness #neurofibromatosistype2 #NF2Aware #nf2family #nf2ismyteam #LetstalkNF2NF2 BioSolutions UK & Europe NF2 BioSolutions ... See MoreSee Less
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1 week ago

NF2 BioSolutions
🌟 Let's Unite and Support the Research to find a cure for NF2! 🌟Today, on NF2 Day, we invite you to join us in making a powerful impact on the NF2 community. Here are four exciting ways you can show your support:1️⃣ Donate to our NF2 BioSolutions fundraiser: Your contribution will help fund groundbreaking research and development. We're thrilled to announce that the first $25,000 donated will be generously matched! Let's maximize our impact together.Link to donate: bit.ly/3WkhAAw2️⃣ Organize your own fundraiser: Be a catalyst for change! Visit our website for a comprehensive resource guide to help you plan and host your own fundraiser. Every effort counts, big or small! Click here: bit.ly/45fkCtX3️⃣ Tune in to our NF2 Day webinar: Get the latest updates on the incredible projects we support in Manchester, UK. Discover the progress being made and the impact of your support. Save the date and be inspired! Register here: bit.ly/3pUOdsD4️⃣ Show your support on social media: Add our NF2 BioSolutions photo frame to your profile picture. Together, we can raise awareness and create a united front for NF2 research and advocacy. DM us to get it!Let's make NF2 history and transform lives. Together, we can make a difference! 💙#NF2Day #EndNF2 #NF2AwarenessMonth ... See MoreSee Less
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1 week ago

NF2 BioSolutions
📢 Exciting news! Get the latest update on groundbreaking research sponsored by @NF2 BioSolutions UK & Europe during our upcoming webinar! 🌍🔬Join us tomorrow on NF2 Day, May 22nd, at 1:00 pm EDT/6:00 pm BST, as we bring you insights from two brilliant Ph.D. students, Adam P Jones and Grace Gregory. They will share their remarkable work on understanding and advancing treatments for NF2. Captions will be available during the webinar!Discover how Adam's research in Manchester defines dominant immunological pathways within NF2 tumors, while Grace's investigation focuses on the immune microenvironment of NF2-related vestibular schwannoma. Their findings could pave the way for groundbreaking therapeutic targets.Don't miss this exclusive opportunity to stay updated on cutting-edge research! Register now: nf2biosolutions.org/nf2biosolutions-webinars/webinar-unlocking-the-potential-of-immunotherapies-f...Support us, donate here: www.facebook.com/donate/635818465119539/565622742352824/If you cannot attend, register to receive the recording with subtitles as soon as it's published.Together, let's make a difference in the lives of NF2- patients! 💙🧠#NF2BioSolutions #NF2Day #NF2AwarenessMonth ... See MoreSee Less
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1 week ago

NF2 BioSolutions
We appreciate greatly your desire to contribute to the fight against NF2 by holding a virtual fundraiser. We want to help you succeed! Visit our website where you can find resources like a guide to set up your personal Facebook fundraiser, a customizable NF2 Day template to share our message with your network, and much more! Link: nf2biosolutions.org/nf2-awareness-month-personal-fundraiser/ ... See MoreSee Less
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