News

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


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:
***************************
*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
***************************

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

unnamed-44

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:


1 week ago

NF2 BioSolutions

Exactly one year ago this week, NF2 BioSolutions UK kicked off as an officially accredited charity focused on supporting research into cutting-edge gene therapies and treatments that will #endNF2.

The launch was marked with the participation of one of our two UK Ambassadors - Clare Goddard - in the Richmond Marathon, who finished the race in a solid four hours and fifty-six minutes

As she said when met at the finish line;

"I feel like I have achieved something really great and launched NF2 BioSolutions as a charity.
With this we can really get going and move forward and get lots of money; there are a lot of grants we can get from foundations for NF2 BioSolutions UK.
I'm definitely going to look into doing lots of different races because there is a lot of funds to be had at races like this.
My idea was to lead from the top, do a marathon and encourage others to do the same.
This is the first marathon I've run. I've been training since May and I decided that I had to do something challenging because all the people with NF2 face challenges every day and I'm healthy and well and this is something I can do to challenge my body to help all who are fighting NF2. They are my inspiration today. They really got me going, I was doing it for them and now we are going to go ahead and make something of this to accelerate the development of gene therapy for NF2."

And if you're in the UK and are interested in learning more, do head to bit.ly/3iCOPum to learn more about the work they're doing.
...

View on Facebook

2 weeks ago

NF2 BioSolutions

Thinking of doing a good deed to commemorate your birthday, or just thinking of celebrating it differently?

Well, why not set up a donation drive in support of NF2 BioSolutions - something that has been done by many, many people in the past! All funds received by us will be used to #endNF2 by supporting research in labs actively working on developing gene therapies that will address NF2 at its source.

If you are interested or have any questions, please contact Terri Rausch at terri@nf2biosolutions.org. And if you'd like our help to design a non-Facebook donation page or special link, we can help with that; please contact Gil Atlan at gilles@nf2biosolutions.org to find out more.
...

View on Facebook

3 weeks ago

NF2 BioSolutions

Greetings everyone! We at NF2 BioSolutions are excited to announce that we have two - yes, two - new members on our Board of Directors, and like all on our team, their families have been directly touched by the disorder.

Amy Williams lives in Louisville, Kentucky with her husband Rob and between them they have been blessed with 4 wonderful boys. Amy is a retired Dental Hygienist and decided 8 years ago to go back to the dental world where she is office manager to a prominent pediatric dental office. Amy’s son Parker was diagnosed in 2018 at the age of 19, and as Amy says;

“He is the first in my family and his father's family to have this diagnosis. You can only imagine our shock and disbelief when we learned of this.
He is being seen by his team of doctors once every six months for a repeat brain MRI and he has a yearly spine MRI to monitor his bilateral vestibular schwannomas, spinal cord tumors and peripheral tumors.
Since his diagnosis, he has had Gamma Knife radiosurgery to a tumor on his right side in August 2018, and he started Avastin in April 2019.
Currently, there is no cure for NF2 and I want to help change this; I believe wholeheartedly in the approach of the doctors, scientists and the amazing team that has come together to form NF2 BioSolutions."

Amy is also our Kentucky Ambassador and she is the one who sends out the warm thank-you letters in response to all the generous donations we receive mailed-in.

As she says in closing;
“I am honored and humbled to have been approached by NF2 Biosolutions to be part of the Board of Directors. I will do everything I can to help educate ,spread awareness, raise funds and to hopefully create a network of support for each other. Let’s help end NF2 together."

Amy can be contacted at amy@nf2biosolutions.org

---

Chantelle Nobis lives in upstate New York with her husband and three children. She is currently a middle school music and chorus teacher going into her 17th year of teaching, having earned a Bachelor of Science in Music Education and a Master’s Degree in Literacy. Her husband Peter was diagnosed with NF2 in 2008 and their daughter Amelia was diagnosed in 2015, with Peter's case of NF2 being a spontaneous one.
Peter has a very mild case of NF2 in the form of bilateral vestibular schwannomas while Amelia seems to be a very rare, more unpredictable case. Since her diagnosis, she has had a golf ball-sized malignant brain tumor (a meningioma) removed in 2015, spinal cord tumors, a cataract, cafe-au-lait spots, intraneural perineuromas, and an additional meningioma in her brain.
Since Peter and Amelia's diagnosis, Chantelle has made it her mission to find others with the same disorder and fight for a cure. She truly believes that gene therapy is the answer to curing NF2, and this - along with her family - is the reason she has decided to join and support NF2 BioSolutions.

As she says;
“I look forward to meeting and working with other families affected by NF2, so we can educate, spread awareness, and fundraising for research and a cure. It is an honor to be added to the Board of Directors, and I will go above and beyond to join them in our mission to cure NF2.”
She can be contacted at chantelle@nf2biosolutions.org
...

View on Facebook

4 weeks ago

NF2 BioSolutions

The best way to motivate and support our researchers, read below:🚨I am an ambassador for NF2 BioSolutions, and I need your help! ‼️I am looking for any artwork/message/photo that can be hung on the wall of the research labs (I will frame them for you) currently working to help us find a cure for NF2. 🌟 We want our researchers to see as many faces of NF2 - to give them some energy and put a face to the “why” for their research!

💙 Each of you has a story, an NF2 hero/warrior and a passion/fight bigger than anyone around you, with the desire to cure this monster of NF2. 💙 Help me share your story💙

💡 *Theres an example below

📬Once you are finished, message Chantelle Nobis for the address to physically mail them! 📫 by October 28th! 🗓

👉If you want more info on the labs, the research continuing, or would like to donate check out our website: nf2biosolutions.org/
or our Facebook page: www.facebook.com/NF2BioSolutions/
...

View on Facebook

4 weeks ago

NF2 BioSolutions

As a patient, NF2 fighters can strike a hard blow against the genetic disorder that is NF2 by donating tumor and tissue samples that can be used for research.
Indeed, every time NF2 BioSolutions talks with leading research labs, these labs ask for NF2 tissues and cell lines made from fresh tissues.

The following was written by NF2 BioSolutions vice president Gilles Atlan;
.
Two weeks ago, my 12-year-old daughter Karen had 2 skin lesions - plexiform schwannomas - removed; one was removed from scalp and the other from the top of her foot. A large number of NF2 patients have these kind of skin bumps, and these tissues are very important for research since they contain the cells that are mutated.
After the surgery, we transferred Karen's tissues to the NF2 Tissue bank that is being run by NF2 BioSolutions and the Children Hospital of Philadelphia (CBTTC). Once the samples are there, it will be analysed, stored and the tissues and data will be shared with labs working on researching treatments for NF2. So far, more than 30 NF2 fighters have transferred their tissues to our NF2 tissue bank - and we want to reach the goal of 100 tissue samples collected in the first year. The process is very easy; it takes just one phone call to state your consent - and that's it! And if you're wondering, our phone lines are accommodating if you're Deaf or hard of hearing.

Here is the video of the removal of the lesion from Karen's foot. It was painless and fast, thanks to the professionalism of Dr Jean at Main Line Plastic Surgery ( www.facebook.com/mainlineplasticsurgery ) near Philadelphia. You can also see Catherine on the video from the NF2 tissue bank that will receive the fresh tissue.
For those interested in donating tissue samples, please contact Shannon Robins from the tissue bank to coordinate their transfer by ROBINSSM@email.chop.edu and CC-me at gilles@nf2biosolutions.org
For more inf, head to nf2biosolutions.org/gene-therapy-and-nf2/open-access-nf2-tissues-cells-bank/

Thank you
Gil Atlan, VP of NF2 BioSolutions
...

View on Facebook

1 month ago

NF2 BioSolutions

We at NF2 BioSolutions are grateful and happy to announce that we have hit a big - and we mean big - milestone, which we couldn't have done without all of our supporters, so thank you!

Basically, we have raised more than US$1,000,000 since we kicked off in late 2018 and all these funds are being channeled to three labs working on four different approaches to either stop tumor growth or kill tumors that have already formed. We at NF2 BioSolutions will continue to scout for promising research into new therapies that could be applied against NF2 mutations. The managements and executives of NF2 BioSolutions are still 100% volunteers that receive no salaries or benefits, a policy that allows us to have the biggest impact when it comes to accelerating research.

Again, thank you from all of us at NF2 BioSolutions - we couldn't have done all we've done without your support!
...

View on Facebook

1 month ago

NF2 BioSolutions

A company with ties to angel investing and venture capital groups that wants to remain anonymous made a very generous donation of USD250,000 to NF2 BioSolutions; a family member of one of their employees is a NF2 fighter.
This donation will boost Dr. Gary Brenner's research into tumor-targeting bacteria - basically genetically modified bacteria that will be introduced into tumors caused by NF2 to kill the cells.

If you work for a company that has a policy of donating to nonprofits or has a donation-matching program, please let them know about the research being supported by NF2 BioSolutions. We are wholly aimed at supporting research into long-term treatment for NF2 treatment that will save lives for years and years to come.
...

View on Facebook

1 month ago

NF2 BioSolutions

The son of Nicole (NF2 BioSolutions's founder) AJ had a brain surgery on Thursday to remove a tumor and trying to save his hearing and facial nerve. Please give all your support to Nicole. Without Nicole's energy and knowledge, we won't have any hope today to have a future long term therapy for NF2. ...

View on Facebook

unnamed-43.jpg

Translate »
search previous next tag category expand menu location phone mail time cart zoom edit close