The NF2 Crew is an online-based support community for patients and family members (and other 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 the 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 who is just 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.
In 1994 two very good friends Jordan Harlow and Jennette Braaten began to toss around the idea of an online support group for individuals with NF2. Surely there had to be more people with NF2 out there! At that time there was a very small close group of individuals with NF2 on the Prodigy Bulletin Board Network, but cross-platform-email was not yet a reality. The dream sat idle.
By 1996 the internet allowed cross platform email and with the help of friends Marianne Schnieder 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.”
And the rest is history…. We now offer support world-wide!