FAQs

About the organization

Fundraising and becoming an active member

Gene therapy and its role in NF2


About the organization:

Question : Are the members of the organization being paid by NF2 BioSolutions or any other organization for managing NF2 BioSolutions ?

Answer : No,  nobody at NF2 BioSolutions gets paid. We are an all volunteer organization, and are very motivated to find a cure since most of us are directly impacted by NF2 (patients, family members and close friends).


About fundraising and become an active member:

Question: How is it possible for NF2 BioSolutions to raise the millions of dollars needed to fund gene therapy trials?

Answer: Many other rare disease foundations, some even rarer than NF2, successfully raised millions of dollars and financed dedicated research into their rare disease. NF2 BioSolutions is in contact with these other rare disease organizations and will follow a similar approach, having learned from their experiences. For example, if we actively engage 200 NF2 families, each raising an average 10,000$ per year, we reach $2 million and this is without corporate support or investors. That’s why we need you to be part of this effort of finding a gene therapy cure for NF2.

Question: If I want to be an active member and help raise money for NF2 BioSolutions, how do I get involved?

Answer: We will guide and support you and explain the different ways you can  reach your fundraising goals by using social media, and workplace, personal,  and school networks.  Please contact Jill at jill@nf2biosolutions.org

Question: What is the next short-term goal for NF2 BioSolutions?

Answer: It is to organize a first meeting in March 2019 that will bring together gene therapy and NF2 experts, among others, to get their opinion and commitment to focus on gene therapy research. To fund this meeting, our goal is to raise $50k.

Question: If I am an active member, what about my privacy?

Answer: You can be an active member and still keep your privacy and/or be anonymous. We always seek approval before any names or personal information are published.


Gene therapy and its role in NF2:

Question : If a gene therapy cure or treatment is found, will I or my loved one have access to it?

Answer: We are dedicated to helping all NF2 patients access any treatments developed through the programs at NF2 BioSolutions. When such a time comes, we pledge to direct our resources to getting treatments to those who need them.

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