Spring 2021 Newsletter

April 2021

This newsletter is packed with updates from NF2 BioSolutions. You’ll learn about our latest fundraising efforts, get to check out the “Linked Together” video, hear more from Dr. Gary Brenner on his Bacteriotherapy lab, learn about Nissa Novas’ NF2 journey, watch our latest webinar on the surgical management of NF2, and plenty more! We’re keeping busy at NF2 BioSolutions working for a cure! We won’t rest until we have one.

Join the One Hundred NF2 Warriors


Please join the challenge for 100 fighters to raise $1000 each. With this money, we will jumpstart our lipid nanoparticle research program. So far 30 families have already signed up for the challenge.

NF2 BioSolutions is working tirelessly to tackle the cruelty of NF2. We continuously evaluate various approaches and techniques to tackle the condition. We are working to fund a new project which will support our gene therapy initiatives. This fundraising campaign will allow us to bring this new NF2-fighting project to life.

This new approach leverages the Pfizer/Moderna Covid19 vaccine delivery technique using lipid nanoparticles (LNPs) as a mechanism to deliver genes to replace mutated NF2 genes or induce tumor cell death. This advanced delivery technique allows multiple treatments over a persons lifetime or could be used years later as a booster after a viral based gene therapy. 

We need your financial support to start this research in collaboration with University of Pennsylvania at the lab of Dr. Michael Mitchell.  The University of Pennsylvania is the academic center where the LNP delivery technique originated and was subsequently used for the Covid vaccine. The Mitchell Lab would collaborate with our other projects to support them in using the LNPs to deliver their gene therapies. In addition we are under the guidance of Jay Hecker M.D. and Michael Nantz PhD, who
are pioneers in using this technique to deliver genes specifically to the nervous system.

$100,000 will fund a full time researcher and lab expenses for 12 months. We can reach this goal if 100 people sign up here to this challenge of raising $1000 each. Deadline to raise $1000 is June 1st, 2021. After signing up, NF2 BioSolutions can support you in your fundraising campaign!

Click here to sign up! 


Check out this video sharing how we are linked together around the world fighting NF2. The video was made for Rare Disease Day, February 28. 

Dr. Gary Brenner’s Bacteriotherapy Lab

Bacteriotherapy is what it sounds like — using bacteria to treat or cure an illness. Gary Brenner, the Director of the Massachusetts General Hospital (MGH) Pain Fellowship, and Associate Professor of Anesthesia, also at MGH, is using bacteria to destroy NF2 schwannomas, and potentially other tumors associated with NF2. While injecting bacteria into your body may not sound appealing, it’s been notably safe, and its performance in the lab is very positive so far!

When you ask Dr. Brenner about his work, he is quick to point out that bacteriotherapy is not a new approach in medicine. It has a long history, literally hundreds of years, of evidence that bacterial infections can lead to cancer regression. Currently, bacteriotherapy is the standard of care for the treatment of bladder cancer, with a 60% cure rate. What is novel about Dr. Brenner’s bacteriotherapy lab, is that rather than looking at cancerous tumors, he is investigating the effectiveness of bacteriotherapy in non-malignant tumors found in NF2 — schwannomas, as well as other benign tumors.

Dr. Brenner’s investigations of injecting bacteria into NF2-associated schwannomas have been remarkably positive, with tumors in mouse models shrinking, and in some cases resolving completely. Dr. Brenner and Mulberry Biotherapeutics, an industry collaborator, have received a grant through NIH to accelerate the project. We know that the question on many people’s minds is, “When will this bacteriotherapy be available for NF2 patients?” While Dr. Brenner cannot give an exact date, he says that, “There is a development plan, and we are working on getting a bacterial therapeutic treatment to clinical trials.”

The latest update from the lab, according to Dr. Brenner, is that they are developing “better bugs.” “We’re working on generating the genetically modified bacteria that we intend to start testing very soon,” he explains.

On working with NF2 BioSolutions (NBS), Dr. Brenner shares, “The support NBS has provided has been exceptionally enabling.” Thanks to NBS funds, Dr. Brenner is hiring a full-time post-doctoral researcher to support his work on NF2 in the lab. Dr. Brenner is excited to have NBS and Mulberry Therapeutics on board supporting the project, saying that it’s almost like a “mini Think-Tank.” “I’m really excited,” he said, “The people on the company side of this project, Mulberry Biotherapeutics, are just amazing, and if anyone can move it forward, they can.”

Watch the Bacteriotherapy Webinar to learn more details about Dr. Brenner’s lab, which NBS is supporting.

Nissa Novas was diagnosed with NF2 when she was 22, just after being accepted to medical school. Read the our interview with Nissa to learn about her experience with this devastating condition, her unique perspective of being an NF2 patient and a doctor, as well as what keeps her hopeful.



If you missed the live webinar on February 28, it’s not too late! Watch this webinar to learn from expert NF2 surgeons about best practices for surgical management, up-to-date techniques for improved outcomes, and a lot of useful information that can help in the decision making process when it comes to surgery and Nf2.
Click here for more information on the webinar, and the webinar transcript.

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.

Great news, especially for those in Italy, France, or Germany! NBS has partnered with Transnational Giving Europe, so anyone donating from these three countries can benefit from local tax laws while bringing the NF2 community closer to the light at the end of the tunnel. It’s a win-win!

Donate at https://nf2biosolutions.org/donate/

If you are in Canada, UK, France, Germany, or Italy and would like to ensure that you receive a tax receipt for your donation and enjoy from your local tax benefits, use this link to donate. 

Hope on the Horizon:

Advancements in Gene Therapy

FDA Approves First Gene Therapy to Address Early Infantile Krabbe Disease

The United States Food and Drug Administration approved the first gene therapy to address early infantile Krabbe disease, also known as Globoid Cell Leukodystrophy. This condition results in progressive damage to childrens’ brains and peripheral nervous systems and mortality by the age of 2. Infantile Krabbe Disease has no other treatments; this one-time gene therapy dose is a potential life saver for children diagnosed with the condition.

Every treatment that is developed helps pave the way for other treatments. With your continued support, NF2 can also join the ranks of disorders cured by gene therapy. 

Thornbury walker’s challenge raises money for new charity – The Gazette

Bramcote boy wants to ‘help find a cure’ for brother’s rare illness that causes tumours – The Nottingham Post

Pa. physician and mother of a boy with a rare disease dedicates her life to funding gene therapy research | 5 Questions – The Philadelphia Inquirer

Follow NF2 BioSolutions on LinkedIn
Following NF2 BioSolutions on LinkedIn helps us raise our social media presence! Please follow us using this link. 
Host a Facebook Fundraiser
Each month, facebook fundraisers bring in a lot of the money NF2 BioSolutions makes! If it’s your birthday, or even just because, hosting a facebook fundraiser is a great, easy way to raise money and awareness for NF2!
Support the Open Access NF2 Tissue Bank
NBS has launched the first open-access NF2 Tissue and Cell bank to help speed up research and encourage new research labs to join the race in finding a treatment for NF2. We are collaborating with the Children’s Brain Tumor Tissue Consortium (CBTTC), which has the facilities for storing and analyzing tissue samples. CBTTC will manage the process of receiving and delivering tissue samples to research centers, while NF2 BioSolutions provides the network of NF2 surgeons and clinics that will send the tumors to CBTTC.  request that their surgeon participate in this. ANYONE, ANY AGE with NF2 that is having a tumor removed, can have their tumor sent to CBTTC.  CBTTC takes care of providing all the consents to be signed, the shipping procedures and supplies to make this as seamless as possible, but we need everyone on board! You can complete this form to get the process started! It will make a difference! Subscribe to our YouTube channel: I NEED A CURE. 

NF2 Stories

Many NF2 fighters were brave enough to share their stories – you can read more of those stories here. To share your story, email Gilles at gilles@nf2biosolutions.org

Shop on AmazonSmile and Amazon will donate to NF2 BioSolutions

Simply shop at on Amazon by clicking here and AmazonSmile donates to NF2 Biosolutions.




YouTube - I Need a Cure

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