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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.

 

 

 

 

 


Upcoming Events


 

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4 days ago

NF2 BioSolutions
We want to share some innovative ways you can help us raise funds for our mission to find a cure for NF2. Together, we can make a difference in the lives of those affected by this rare genetic disorder.🌐 Online Fundraising Ideas for Our Amazing Contributors: 🌐1️⃣ Virtual Auctions: Bid on unique items and experiences from the comfort of your home. Your generosity can bring us one step closer to a cure!2️⃣ Birthday Fundraisers: Celebrate your special day by setting up a Facebook fundraiser and inviting your friends and family to contribute. Every dollar counts!4️⃣ Online Challenges: Get creative with challenges like the #NF2AwarenessChallenge. Challenge your friends to participate and donate, making NF2 a household name.5️⃣ Monthly Giving: Consider becoming a monthly donor. Your sustained support ensures we can continue our research efforts year-round.Your dedication and contributions drive us forward. Let's work together to create a world without NF2. 💪💙 ... See MoreSee Less
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5 days ago

NF2 BioSolutions
Discover how bacteriotherapy is advancing treatment options for schwannomas. The latest research article from The Brenner Lab explores the use of attenuated Salmonella typhimurium strains as immunotherapies. NF2 BioSolutions funded this research.Schwannomas are slow-growing benign neoplasms that can cause pain, sensory/motor dysfunction, and even death. This study dives deep into the potential of bacterial immunotherapy to combat these tumors.Read the full article here: buff.ly/3rnM9Kz ... See MoreSee Less
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6 days ago

NF2 BioSolutions
The NF2 Biobank is an open, ongoing collection of tissue samples and other biospecimens, including blood and bodily fluids donated by people with NF2. The Biobank has been developed by NF2 BioSolutions with the generous support of private donations and grants to accelerate NF2 research. Find more information here: buff.ly/3OGug2A ... See MoreSee Less
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1 week ago

NF2 BioSolutions
When Elliott Bevevino was born in early 2021, his parents thought they had a healthy baby boy. Little did they know that their world would soon be changed by a rare disease called Neurofibromatosis Type 2 (NF2).NF2 causes noncancerous tumors to grow on nerves, often affecting the brain or spinal cord of children. It's an incredibly rare condition, impacting only 1 in 25,000 to 1 in 40,000 people. Elliott's family is on a mission to find a cure for NF2, and they need our help.To support this important cause, we're hosting a spaghetti dinner and basket raffle with live music on Oct. 8 from 1 p.m. to 6 p.m. at the Pleasant VFD Social Hall. Tickets are $10 for adults and $5 for kids. Your contribution will go a long way in funding research initiatives through NF2 BioSolutions, a non-profit founded by NF2 patients and families.Let's come together as a community to make a difference in Elliott's life and help find a cure for NF2. To purchase tickets or donate, please email elliottspasta@gmail.com.Read more about Elliott's story and NF2 here: buff.ly/3PKKiJm ... See MoreSee Less
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2 weeks ago

NF2 BioSolutions
Hello everyone, I'm Lindsay Bevevino, and my husband Joe and I are proud Warren residents raising two incredible boys. Our youngest, Elliott, was diagnosed with the rare Neurofibromatosis Type 2 (NF2) at just 6 months old. NF2 is devastating, causing tumors in the brain and spine.We're supporting NF2 BioSolutions, a nonprofit dedicated to research and support. On October 8, 2023, we're hosting a spaghetti dinner and raffle at Pleasant VFD Social Hall, Warren, from 1-6 p.m. Your donation, attendance, or help is greatly appreciated. Contact me at 814-218-6350 or elliottspasta@gmail.com. More information here: buff.ly/45Nd4hZ Thank you for joining our fight for Elliott's life. ... See MoreSee Less
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3 weeks ago

NF2 BioSolutions
On Friday, September 1st Floyd, NY held its first annual Gary Farrell Memorial Golf Tournament. Gary was a very dedicated Dad and husband. He also served his community by volunteering. Gary was very humble and would be so happy for this honor of raising money for an important cause like NF2Biosolutions. The Golf Tournament raised $1,476 for NF2Biolutions. Pictured is Gary's wife Michelle, The Nobis Family, & Ed Roser the coordinator of the event. ... See MoreSee Less
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3 weeks ago

NF2 BioSolutions
July 15th marked the final day of competition for the 5th Annual Avalon Invitational Offshore Fishing Tournament with a gathering of participants, sponsors, and friends at the Avalon Marine Center. The 2023 event provided another data point showing the growth of the tournament in terms of net proceeds, growing from $8,000 in 2019 to over $63,000 donated to NF2 Biosolutions in 2023 through this event! That is $167,000 of total donations over the 5 years that the big-game fishermen of southern New Jersey along with the sponsors have been “Fishing For a Cure!”For more details click here: buff.ly/3ElVPZa ... See MoreSee Less
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4 weeks ago

NF2 BioSolutions
We're thrilled to share some fantastic ideas for Facebook Fundraisers that go beyond just birthdays! 🎉🎂 We believe that every day is an opportunity to make a difference, and with your passion and creativity, we can continue our mission to conquer NF2 together. 1. Fitness for a Cause: Whether it's a virtual 5k, a yoga session, or a dance party, get moving and raise funds for NF2 research! Invite your friends to join, donate what they can, and let's sweat it out together.2. Virtual Art Auction: Do you have a knack for creativity? Host an online art auction where you showcase your artwork or collaborate with other artists. The funds raised will contribute to advancing treatments and therapies for NF2. 4. Celebrate Kindness: Spread the love by dedicating a fundraiser to acts of kindness. Challenge your friends to do something nice for others, whether it's volunteering, paying it forward, or simply sharing positive vibes.5. Milestone Moments: Did you reach a personal milestone, like hitting a fitness goal or finishing a project? Celebrate by asking friends and family to donate in honor of your achievement, supporting NF2 research in the process. Remember, fundraising isn't limited to birthdays – it's about the impact we can create together every day! Let's rally around the NF2 community and work towards a future free from NF2.Ready to get started? Head over to the "Fundraisers" tab on Facebook and select NF2 BioSolutions as your chosen cause. Your dedication and generosity bring us closer to breakthroughs that can change lives. 🙏✨Thank you for being the driving force behind NF2 BioSolutions. Together, we can turn dreams into reality. ... See MoreSee Less
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4 weeks ago

NF2 BioSolutions
In 2021 two lifelong friends, Andy White and Mike Whitehouse walked the Wainwright Coast to Coast to celebrate their 60th birthdays and raise more than £14,000 towards research into finding a cure for a rare genetic condition, NF2-related schwannomatosis - NF2 for short.And now in 2023, a new team aims to beat that amount and widen our scope to include Schwannomatosis more generally. Donate and learn more here: buff.ly/3QRhS16 ... See MoreSee Less
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4 weeks ago

NF2 BioSolutions
Update KY Ambassador’s Pampered Chef Party….Thanks to all!! My online party Amy Meyer Williams was a huge success and Pampered Chef is donating… drum roll please….$753.26 to NF2 BioSolutions 🎉 🎉 💚💙💚💙I appreciate each and everyone one of you!! Love to all! 💚💙 ... See MoreSee Less
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1 month ago

NF2 BioSolutions
Learn more here: buff.ly/3rVK4pk ... See MoreSee Less
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1 month ago

NF2 BioSolutions
End of the summer SUNFLOWER FIELD PORTRAITS, MERMAID & PRINCESS PORTRAIT SESSIONS Book Your Session Today with Tracey Ahrendt Photographic Artist 25% of Proceeds will go to NF2 BioSolutions! ... See MoreSee Less
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1 month ago

NF2 BioSolutions
Meet Jessica, Laurel, Victoria, and Karen – a true sisterhood formed in the face of a rare disease. They connected online, and in January 2020, they took a remarkable step forward. Becoming the cheerleaders for NF2 BioSolutions in the Disney World Marathon, they stood together on the starting line, transcending borders and backgrounds.Their bond with talented scientists fighting for a gene therapy cure was solidified during this visit. These young heroes, battling over 50 tumors collectively, remind us all why the fight against this disease is so crucial. Let's rally behind them and support the ongoing research. Watch the video here: ... See MoreSee Less
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