The NF2 Crew is an online-based support community for patients and family members (or loved ones) with Neurofibromatosis Type 2. We are one of the largest NF2 based support groups in existence with hundreds of members spanning the globe. Our "meet-ups" are held through a variety of Internet-based communication mediums.
We also organize occasional "Crew gatherings" where members get together to meet in person. We have an annual NF2Con in Las Vegas, as well as a Ohio Gathering every year in Columbus over Memorial Day weekend. We also try to get a group together each Spring in Florida.
Every member is either directly related to someone with NF2 or has NF2 themselves. Though it can affect different people in different ways, one of the expressions we often hear from new members is "Wow, there is someone out there whose like me!" We share information on doctors, hospitals and treatments, as well as Non "tumor-talk" when you just need a break from NF2. Anything said is considered confidential, if a Crew member just needs to vent, share something of a personal nature or just ask a question, we want them to feel this is a safe haven.
By 1996 the internet allowed cross platform emailing and with the help of friends Marianne Shnieder and Steve Silverman a handful of people tried it out. Word of mouth soon spread ... and the group grew.
In time there was group consensus that this group should have a name. In the usual spirit of democracy, various names were tossed out, a vote was taken, and the NF2 Crew was the clear winner. Members of the Crew are now affectionately referred to as "Crewbies."
~Caring~ ![]() Australia, 2002 |
~Sharing~ ![]() Las Vegas, 2006
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~Friendship~ ![]() Florida, 2005 |
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