Message from Dr Nicole Henwood, founder and president of NF2 BioSolutions and mother of AJ diagnosed with NF2
“I am highly optimistic that this gene therapy strategy can represent an effective and safe therapy for patients with schwannomas – whether associated with NF2, schwannomatosis or sporadic schwannomas”.
Gary J Brenner, MD, PhD, Associate Professor, Harvard Medical School, Director Massachusetts General Hospital pain medicine fellowship
What is Gene Replacement Therapy?
video provided courtesy of Avexis
Our next steps include continuing to identify and sponsor leading gene therapy labs to investigate the different gene therapy approaches that were discussed at our March 2019 consortium in Boston. At the NF2 Gene Therapy Consortium, organised by NF2 BioSolutions, we had more than 40 biotech executives, researchers & clinicians from NF2 or leading Gene Therapy labs, all brainstorming on which gene therapy approaches could be applied on finding a cure for NF2.
To date NF2 BioSolutions is collaborating with three labs to accelerate gene therapy research for NF2. Check out our research initiatives page.
NF2 BioSolutions was founded in July 2018 with the goal of fighting back against NF2 and we won’t stop until we save our children and ourselves! We need you to volunteer your time and/or donate to advance research studies to the next phase. We are managed solely by volunteers so all funds go towards accelerating NF2 research. Check out our Board of Directors and Scientific Advisory Board.
Contact Gil at firstname.lastname@example.org to volunteer or to learn more about us.
Current fundraising status:
Mission: We are a non-profit organization (Tax-ID 83-0940046) seeking a cure or preventative treatment for NF2 by vigorously supporting and advancing existing and next-generation biomedical technologies, such as gene therapy and immunotherapy.
Vision: We envision a world where those living with NF2 will have access to cutting-edge solutions to live full and productive lives, free from daily physical and emotional pain or suffering.
Why is rare disease research important?
- Over 7,000 rare diseases have been identified. Out of these, 600+ are currently in gene therapy trial. Our mission is to put the focus on NF2 and convince leading labs to run NF2 gene therapy trials.
- While each disease on its own is rare, 1 in 10 people are living with a rare disease. Every treatment that is developed helps to pave the way for other treatments.
- Many cancers and benign tumors show mutations in the NF2 gene. A therapy for NF2 may also help in treatment of those cancers. In addition to curing NF2, help us cure sporadic vestibular schwannomas (formerly know as acoustic neuromas), meningiomas, breast cancer, prostate cancer, colorectal cancer, and mesothelioma, amongst many others.
Support NF2 BioSolutions and buy merchandise, t-shirts, cups and other items here. Fifty percent of the sales price is donated to NF2 BioSolutions.