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February 2nd, 6-10pm. Fundraiser event at Tilted Axes in West Chester, Pennsylvania.  Axe Throwing event includes food, wine, and beer and a silent auction.

Click here to buy tickets.

2 days ago

NF2 BioSolutions

Here are 4 different ways gene therapy is used.
If you want a gene therapy to be developed for tackling NF2 at its root (the mutated gene), then it is time for you to get involved, we will welcome you in our wonderful team, contact us by commenting below.
It is really time to say bye-bye to surgeries, radiation and harsh chemo drugs ...
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6 days ago

NF2 BioSolutions

Hi, if your birthday is coming up and you want to support us like hundreds of others have, you can simply go to this link and create your birthday fundraiser for advancing Nf2 brain and Spine research , any sum is welcome, thank you ---> www.facebook.com/fund/NF2BioSolutions/ ...

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1 week ago

NF2 BioSolutions

It is going to change ! contact us to volunteer/support/donate to NF2 BioSolutions ...

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1 week ago

NF2 BioSolutions

Happy to post a recap message about the rounds made at the US Capitol Hill this week. The US Congress, house and senate, both need to pass a bill to allocate funds from the Department of Defense for NF research. Without representatives from the NF community knocking on doors, there is no money listed as a line item. Our request adds an additional $15 million to the DOD budget through the Army in the CDMRP (congressionally directed medical research program) for the NFRP (NF research program) and the NIH (national institute of health). Previous to these efforts, there was no research at the NIH and now the NIH is up to nearly $33million in NF research thanks to the programs coming out of the $15million DOD funds. The DOD funding allows for new researchers, new ideas, and new projects to be considered and funded. Once those projects gain traction, NIH establishes trials and runs these trials through the NF consortium (grown to 24 sites across the country). The consortium is funded by the DOD and works hand in hand with the NIH. Many of our representatives here this week as well as loved ones are able to receive new and innovative treatments thanks to these trials at the consortium sites. We asked our congresspersons to sign on to a “dear colleague” letter, sponsored by both a democrat and republican for years now. This letter brings a vote to the floor for the $15 million to be added to the budget. We also requested report language on NF research at the NIH in the 2020 labor, health and human services, education appropriations bill. ...

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1 week ago

NF2 BioSolutions

FAQ (frequently asked questions) on gene therapy (from NORD)NORD’s RareEDU™ released this video, Gene Therapy: Your Questions Answered, in order to address a vital topic to today's rare disease community. The goal of ... ...

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1 week ago

NF2 BioSolutions

This is the car of our new co-ambassador in Canada Ontario Craig Gerlach and Tanya Lamarche, fighting for their daughter Mya, 10.,! ...

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1 week ago

NF2 BioSolutions

#Nfadvocates

Capitol Hill here we come !
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1 week ago

NF2 BioSolutions

Support gene therapy for nf2 and donate: www.gofundme.com/ineedacure

m.facebook.com/story.php?story_fbid=10156314307156378&id=9335481377

6abc Action News
AXING OUT RARE DISEASES: When 7-year-old A.J. was diagnosed with NF2, his mom vowed to find a cure. Since then, she started a 100% volunteer non-profit, NF2 BioSolutions, to fund research for patients like her son around the world. Watch as 6abc was there when hundreds gathered in West Chester, PA at Tilted Axes, to "AXE OUT" NF2 and other rare diseases! 6abc.cm/2MXv6Xf
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2 weeks ago

NF2 BioSolutions
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2 weeks ago

NF2 BioSolutions
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2 weeks ago

NF2 BioSolutions

What an amazing and creative fundraiser in West Chester, PA! Such a warm crowd supporting the Henwood family. Thank you for helping in this fight.
Here are some numbers:
- Net raise : $35,000
- 450+ people came and had fun!
- 55 items donated to the silent auction ($10k collected)
- Hundreds of beers, bottle wines, 1000+ hotdogs!
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2 weeks ago

NF2 BioSolutions

Dr Nicole Henwood, President of NF2 BioSolutions interviewed by ABC News. The report will be aired this month. #nf2 #ineedacure ...

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