To see our newsletters, Press release and TV coverage click here.
To see our research initiatives news click here
To see our webinars explaining the science behind the projects we are supporting click here
Due 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 
existing 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 2019: NF2 BioSolutions signed a contract in July 2019 to partially fund a NF2 
Gene 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.
June 26th 2019: Dr. Mueller of the University of Massachusetts Medical School attended NF2 BioSolutions’s NF2 Gene Therapy 
consortium 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
NF2 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
To 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
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
Click here to Follow us on Facebook and don’t miss our updates:
In case you missed the Bacterial Therapy for NF2 Treatment Webinar given by Dr. Gary Brenner and Dr. John Mekalanos, you can catch the recording here.
The following is a link to the recorded webinar (which includes 30 minutes of presentation and 30 minutes of discussion). Please take some time to view and feel free to share with others who you think would be interested.
There was exciting information shared about recent research and early results presented regarding the tremendous potential that Bacterial Tumor therapy holds for destroying Tumor cells.
As was mentioned in the webinar, we invite you to be part of a campaign to raise awareness and funds the next step of this research - to increase the efficiency of the bacteria and testing it in mice . This campaign is called “Axe Out NF2” and it has a financial goal of $100,000 to be raised by August 31st
We have already received some generous gifts as a result of the webinar. Thank you to those who have already participated. Will you please consider being an ambassador and a philanthropic investor in this campaign that holds such promise? The following is the link to make a donation, learn more, and share with your network.
Donate here: donorbox.org/axeoutnf2
As always, do not hesitate to reach out to us if you have any questions or need additional information.
nf2biosolutions.org/events/bacteriotherapy-for-nf2-webinar-june-2020/
Bacteriotherapy for NF2 Webinar – June 2020
nf2biosolutions.org
Register for our upcoming webinar – Bacteriotherapy for NF2 – on Tuesday, June 23rd, 2020 at 6pm ET. We will hear from Dr. John Mekalanos from Harvard Medical School and Dr. Gary Brenne...Coming up! Our next webinar is tomorrow, June 23rd at 6pm est (with live captioning in English). Register to attend!
nf2biosolutions.org/events/bacteriotherapy-for-nf2-webinar-june-2020/
Bacteriotherapy for NF2 Webinar – June 2020
nf2biosolutions.org
Register for our upcoming webinar – Bacteriotherapy for NF2 – on Tuesday, June 23rd, 2020 at 6pm ET. We will hear from Dr. John Mekalanos from Harvard Medical School and Dr. Gary Brenne...*****Counting Cars NF2 Event- CAN’T BE MISSED!!!!!*******
NF2 BioSolutions has some exciting news today, and it's all thanks to faithful supporter Lona Smith, who is raising awareness about NF2 on behalf of her eight-year-old daughter Sky, who was born a NF2 fighter.
Sky's story will be featured on The History Channel's "Counting Cars" at 10pm EST this Wednesday!
Find out more about Sky's struggle at nf2biosolutions.org/sky/ and head to www.history.com/shows/counting-cars/season-9/episode-3 if you'd like to learn about the episode.
nf2biosolutions.org
Donate in honor of Sky Full of life, laughter, and brilliant are a few ways to describe our adorable eight year old daughter Sky. Her love for life is obvious as she nurtures her pets: dogs, a gia...Register for our upcoming webinar - Bacteriotherapy for NF2 - on Tuesday, June 23rd, 2020 at 6pm ET. We will hear from Dr. John Mekalanos from Harvard Medical School and Dr. Gary Brenner from Massachusetts General Hospital about how their labs are working with genetically modified bacteria to kill NF2 tumor cells and how you can support this exciting new project! (Presentation will be live captioned in English)
nf2biosolutions.org/events/bacteriotherapy-for-nf2-webinar-june-2020/
Bacteriotherapy for NF2 Webinar – June 2020
nf2biosolutions.org
Register for our upcoming webinar – Bacteriotherapy for NF2 – on Tuesday, June 23rd, 2020 at 6pm ET. We will hear from Dr. John Mekalanos from Harvard Medical School and Dr. Gary Brenne...We're on Facebook and we're on YouTube too! If you haven't subscribed, you can do so here at bit.ly/2ZWyfzd
By-and-large, it's a good way to keep updated about what we're doing in our fight against NF2. We'll have videos of our fundraisers and recordings of our webinars, all viewable wherever, whenever.
Please welcome our newest NF2 BioSolutions Ambassador, Pooja Khelani. Pooja - who is contactable via email at pooja@nf2biosolutions.org - will be representing us in her home country of India.
Her story in her own words can be read at nf2biosolutions.org/about-us/your-local-ambassadors/india/
nf2biosolutions.org
Pooja Khelani I am fighting to raise awareness about NF2 to common people because I want them understand what NF2 is and how it has affected me. It’s been a five years long journey for me wit..."Being both a NF2 patient and a molecular biologist has made me realize that there is still a lot that is not known about NF2 and how to treat it. Particularly in the Philippines where I came from, there are no centers specializing in NF2 patient care or foundations focused on helping people with NF. NF2 BioSolutions has sparked light and hope in this battle for the many NF2ers around the world. I raise awareness to let NF2ers like me know that you are not alone. Every day I spend in the lab I dedicate to help bridge that gap in NF2 scientific/clinical knowledge and find a cure for this disorder."
- Krizelle Alcantara -
Our latest newsletter is out, with some exciting new highlights about our progress towards gene therapy for NF2 and it's readable at mailchi.mp/6318c52a0d56/webinars-a-tissue-bank-and-new-research
Front and center is a link to a recording of our first-ever webinar by NF2 BioSolutions Chief Scientific Officer Dr. Edgar Rodríguez-Lebrón, introducing genetic therapies and their awesome potential
If you haven't subscribed to our newsletter yet, you can do so by entering the relevant details at bit.ly/3gACVk7
Webinars, a tissue bank, and new research!
mailchi.mp
We unfortunately had to postpone our April 3rd Novel Therapies Consortium in Boston this year as a result of the COVID-19 pandemic. We had 45 NF2 and gene therapy researchers and clinicians planning to attend from all around the world.Please welcome our newest NF2 BioSolutions Ambassador, Danette Halloran. She is the mother of two 15-year-old NF2 fighters - Elizabeth and Alanna - and she will be our person on the ground in Minnesota, USA.
As she says about why she and her husband Michael have stepped up as volunteers, "Mike and I are determined to help NF2 BioSolutions raise awareness and money for gene therapy research because it is so promising. We want to find a cure for NF2 so everyone diagnosed with NF2 – and the other rare diseases that would benefit from this cure – can live a full life of promise, hope and impact – without symptoms."
She can be contacted at Danette@nf2biosolutions.org
nf2biosolutions.org
Danette Halloran I live in Minneapolis, MN with my husband Michael and our 15-year-old twins daughters (Elizabeth and Alanna.) When they were 12 years old they were diagnosed with NF2. Our daughter..."Flying across many states to have MRI images taken of the brain and spine every six months and Avastin infusions every three weeks after Gamma Knife radiotherapy. Praying, hoping that the the tumors remain stable and praising God that they are now - that's life. To know my son is to love him, and his laugh is contagious. This is why I volunteer with NF2 Biosolutions; to help him and all others with this genetic condition and how can I not? The more awareness we create, the more funds we help raise - and that will help our scientists and researchers destroy this genetic condition. One day we will be able to shout out to the world that NF2 has been defeated. Please help by supporting NF2 Biosolutions."- Amy Williams -
Think of a noise that in some cases can't be stopped, won't be stopped. That's something quite a few NF2 fighters have to endure.
You may have chanced upon the notion of spreading awareness and realized how it enables communities to connect and flourish; however very few realize what spreading awareness means for NF2 sufferers.
Aside from the fact that such an event offers an opportunity to raise funds, encourages research, generates more support, and removes any kind of stigma surrounding the disease, NF2 is one of the most marginalized and unheard-of diseases across the globe. And given our mind’s powerful urge to fit in with the group, NF2ers suffer from societal ignorance everywhere they go and therefore I am spreading awareness to remove this “dis-ease” from the disease.
-Adham ElKhouly -
We have four long term NF2 therapy approaches but they won't progress without your support. Please be part of the solution by donating at nf2biosolutions.org/donate or below click donate button. To know more, these are the four approaches:
1. The Gene Therapy Center at Nationwide Children’s Hospital: The Meyer lab run by Dr. Kathrin C. Meyer will use a gene addition approach by using a vector - basically a virus - to add a healthy NF2 gene into cells. This will potentially stop or slow tumor growth and help prevent new tumors from forming
2 . The Mueller Lab at the University of Massachusetts. They will use a silence and replace gene therapy approach, which is characterized by first shutting down the mutated (bad) NF2 gene and then adding in a healthy copy. They have been using this platform with success in other genetic diseases.
3 . Dr. Gary Brenner’s research lab at The Massachusetts General Hospital. He is using the suicide gene approach to directly destroy existing schwannomas.
Approach 4. Tumour-targeting bacteria therapy. At Harvard Medical School/ Mass General Hospital, Boston, NF2 BioSolutions is working with Dr Mekalanos’s lab.
A genetically modified bacteria is introduced to kill the NF2 tumor cells via several mechanisms including direct killing, inducing an anti-tumor immune response - immunotherapy - and inhibiting blood vessel formation. Bacterial cancer therapy has been proven safe and well tolerated in multiple clinical trials. For example it is the treatment of choice for treating bladder cancer in a non-invasive manner, and it has a 50% cure rate. Trials on mice have proven its efficacy. Work is in progress to genetically modify the bacteria.
[watch the video below and if needed put captioning on in YouTube]
youtu.be/yJKsn4lRokA
NF2 BioSolutions is breaking the research silos to cure NF2
youtu.be
NF2 BioSolutions, a patient led nonprofit, is breaking the silos by jumpstarting NF2 novel therapy research projects and by generating collaboration between ...“I raise awareness about NF2 because I want people to understand what NF2 is and how it affects me. I’ve lost vision and hearing. I’ve had numerous surgeries. No one should have to endure the pain NF causes. It’s been five years that I’ve been on chemotherapy and now my doctors and I are exploring trials because the chemo is no longer working. I’m graduating high school this month and will be starting my journey to become a nurse. I support NF2 BioSolutions because of their determination to find the cure for NF2. I want a future. I need a cure. NF2 BioSolutions gives me hope”.
- Seth Gelwasser -
