100 NF2 Fighters Challenge: How-to fundraise online

Thank you, we completed successfully this campaign, we reached our goal of raising more than $100,000

Why are we fundraising? (Text you can use in your communications):

“People with NF2 have a genetic mutation that results in growth of multiple tumors in the nervous system. They develop schwannomas, meningiomas and ependymoma tumors which first appear during childhood.  These tumors cause deafness, pain, sensory/motor dysfunction, and eventually death through compression of the brain stem, spinal cord, and nerves. Effective chemotherapy is non-existent.  Surgery and radiation can be more damaging as the tumors themselves. Most patients end up with nerve damage that leads to deafness, blindness, chronic severe pain, loss of vocal cord and motor function.  The paucity of therapeutic options makes the treatment of NF2 tumors a major unmet medical need.

NF2 Biosolutions is putting the best labs and best minds in the race to tackle the cruelty of NF2. We continue nonstop at evaluating new approaches and techniques to tackle NF2.
So far we support four different novel therapy approaches. Since we don’t know yet if these approaches that are demonstrating promise in the lab will ultimately work as well in a human, we don’t want to focus on just one area. We want to continue to onboard new labs and researchers with novel ideas and medical approaches.

Dr.Brenner, a physician scientist at Harvard/MGH, developed an NF2 therapy using an adeno-associated (AAV) viral vector to deliver the  ASC suicide-gene to schwannoma cells to induce the death of the tumor cells, leading to shrinkage and sometimes resolution of the tumor. This gene therapy strategy utilizes a single transgene that can: 1) induce cell death in the treated cells, 2) propagate the death signal to adjacent tumor cells, and 3) initiate innate and adaptive immune responses that control future tumor formation. However, the use of a virus to deliver this suicide-gene is challenging since patients develop neutralizing antibodies to the viral vector. Thus, the therapy can only be used once. NF2 is a relentless and lifelong disease and any meaningful therapy requires multiple administrations.

 Recently, a new gene therapy technology that overcomes this redosing challenge has been developed.  It leverages lipid nanoparticles (LNP)  used in the mRNA Covid19 vaccine delivery technique to deliver genes. These tiny particles can deliver mRNA or DNA to cells instead of a viral vector. LNPs don’t have the re-dosage limitations of viruses because the body doesn’t recognize them as foreign. 

We need your financial support to start this research in collaboration with University of Pennsylvania (Philadephia) at the lab of Dr. Michael Mitchell. The University of Pennsylvania is the place where LNPs delivery technique originated.
$100,000 will fund a full time researcher and lab expenses for 12 months. We will reach this goal if 100 people are up to the challenge of raising $1000 each.

I am one of the 100 fighter and I need your help to reach my goal of $1000″

Different ways to fundraise:

1. Fundraiser Webpage to share:

You can share this fundraiser page https://donorbox.org/one-hundred-nf2-fighters by email or on social media but don’t forget to tell them to type in the form your name (fundraiser fighter) so we will know that the donation is toward your $1000 goal. We will let you know when someone donated.

Or do you want your private fundraiser webpage?  Like this one for example : https://donorbox.org/100-fighters-challenge-robyn ? With your own $ meter goal. Please request it to Gilles at gilles@nf2biosolutions.org

2. Create your Facebook fundraiser, it is easy:

Create your own Facebook donation campaign, and post on your Facebook wall with your own fundraiser goal. Go here for instructions on how to set it up.

See the fundraiser of Matt as an example: https://www.facebook.com/donate/291443865699398/10225206951190654/

You can also add the “Lion 100 fighters” image on your fb fundraiser to drag more the attention. Here is the image that you can download and add to your fundraiser.

3. Find items to auction and create an auction on Facebook

Here is a simple How-to video where Chantelle Nobis explains how she created her auction on Facebook and raise funds. Do not hesitate to contact Chantelle at chantelle@nf2biosolutions.org

4. Pampered Chef sales 

.  You can run your own pampered Chef product sales to your friends and family network, 20% of the sales will go to NF2 BioSolutions. If you are interested contact Erin Stuckey erin.stuckey78@gmail.com (210) 753-6449 and tell her you want to raise funds for NF2 BioSolutions. Erin will guide you in making this event successful.

5. Card Party Event Fundraiser

In Michigan, people are fond of playing Euchre (a trick taking game with a trump, played by four players in teams of two) but this would work with any similar card game. Terri Rausch, board member of NF2 BioSolutions is explaining to us how to run such an event, Click here for all the info.



6. Ice Cream Social Fundraiser Event 

A social event for friends, family, people impacted with NF to gather, eat ice cream, network and have fun.  You can do this by donation only, set out a box and people throw in cash or checks.  Here Terri is explaining how to run such an event.




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