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By Jordan Harlow - Crew Founder


Approx. April 17, 1996; We don't know for sure as no one saved the original post!


Bouncing around an idea between Jordan Harlow, Marianne Schneider, Jennette Braaten, and Steve Silverman   Jordan met Marianne online through a mutual friend, Joan Emerick, using AOL.  Marianne linked up with Steve in the SayWhatClub (SWC).  Meanwhile, friend Jennette was meeting people with NF2 on Prodigy: A group of people with NF2 who were linked on Prodigy's online Bulletin Board.  They were planning to meet in Las Vegas in the spring of 1996. To keep posted on trip plans, Jordan joined Prodigy for a short time. 

Dreams of having a cross-service, support and informational group for people with NF2 cascaded around in Jordan's head.  Coincidentally, Marianne, a member of the SayWhatClub (an online support group for deaf/hard of hearing people) started thinking about the exciting idea of getting all people online with NF2 together into one large group.

Jordan, Marianne, Jennette, and Steve began visiting by interweaving email trying to figure out a way to make the dream happen.  Marianne put Jordan in touch with Bob Elkins, founder of the SayWhatClub, in order to uncover how the SWC began.  Bob was enthusiastic at once and they started to think in earnest of making the idea fly.   As things developed Jennette and Jordan planned to talk to the group in Las Vegas,  while Marianne chatted up the idea with the SWC from home electronically. 


April 13, 1996..

Hi folks,
                  I have been talking to other NF2ers about trying to start an "email exchange" among NF2ers... have you heard about the newsletter "NF2 Review?" There seems to be a whole "family" of NF2ers on Prodigy and others out there in cyberspace. In fact a group of them are meeting in Vegas right now... I think it would be cool if "their family" hooked up with "our family" to make an NF2 family....


"We'd like to be friends...that's why this group (SWC) was started."  "Count me in. I met a nice guy, from CA. . He has NF2. his E mail address is ... " " yes, yes to joining in with other NF2'ers... count me in!"   "... I would be really happy to find my niche in an NF group.... count me in!" "I think it would be a GREAT idea." "I think we need to keep in contact with as many others(NF2'ERS)as possible." 


The honor for this achievement goes to Steve Silverman, who jumped in and started things off by saying "this is the fledgling post of the as yet to be named NF2 Online group." He also stated that he was looking forward to sharing the friendship and support and information of fellow NF2'ers. 


Now gang, We're off! Steve did jump the gun on me a bit, but I am a procrastinator by rule... I have to make sure everything is checked and double-checked, so Steve's post a few days ago was very cool with me. Also, for the Prodigy gang... this is what I've been talking to you guys about for the past few months. I am very excited about it and really hope this takes off. So, since we are all new at this, I'd love to hear what you guys want to accomplish with all of this or what you want to see or just let us know if you are even getting this stuff. :) Is anyone having trouble replying to this as a group? We will try to help out in anyway we can. Also, please, let us know if you don't want to get these postings. No hard feelings, but we need to know. Well, I truly hope this is going to pan out for us and we will be a happy group soon!


First List Management Protocol
Bob Elkins taught Jordan how the SWC worked, and the NF2 group set up their mailing list. This consisted of mass mailing to about 15 or so initial members of what would become a crew... Mass  mailing involves listing all 15 addresses into one TO: box, separated by a comma, so that one note would go to all 15 people at the same time. This list management procedure was followed for 15 months, but               became tedious as the group swelled from 15 to 30 then 40 then 55; still others would come and go, yet we grew and grew all-the-while becoming the Nf2 Crew. Any list change required weekly updates--with all the different internet service providers (ISP's)--- which, though challenging, was sometimes a nuisance.  Guidelines Written and voted on during the first few months of the group's existence. The original administrators of the group felt some basic ground rules were needed to ensure success. Some rules included a list etiquette, which encompassed the rights of privacy pertaining to member screennames, addresses,  personal information and encouraged respect for each others' opinions and ideas. Guidelines were also     established to help make sure no one was left out of the group due to "short lists" and some guidelines  were set-up to facilitate smoother running of the posts. The original guidelines have been amended and some even dropped as new procedures went into effect. (The "administrators" no longer exist as they were only in place to initially get things organized. The group now works together to initiate and complete projects etc.) 

Our Name -- The NF2 Crew was chosen by means of a contest within the group. Suggestions for names were submitted and the group then voted on their top two choices. After votes were tallied, members were asked to vote again from a smaller list for one group name. The NF2 Crew was chosen and remains today. By May 24, 1996, 14 names were submitted as possibilities for the name of the NF2 group... 1.   NF2 Net 2. Nice Friends, Too 3. Nice Folks, Too 4. NFamily 5. NF2 Online 6. NF2 4U 7. NF2 CREW  8. i-NF-ormed 9. 'N(U)F's 'N(U)F (subtitle: NF2 includes "U") 10. (N)ew (F)riends 2 11. (N)ew (F)amily 2 12. (N)euro (F)amily 2 13. (N)euro (F)riends 2 14. NF2Life The second round of votes,  shortened the list to four possibilities... 1. Nice Folks Too 2. NF2 Crew 3. NF2 Net 4. NF2 Online Our member Lynn and her husband, Pat, have the honor of submitting the winning selection.  Members have likened the name to boating crews that work together for a common cause. Also supporting each other through the good and the bad. 

Bios -- Short biographical sketches are collected on each member that wishes to submit one. They in turn will receive all the bios collected from the rest of the group. All new members are encouraged to submit their bio so that they can learn more about the members of the group. 

Webpage -- located at http://www.webcrossings.com/nf2crew  The idea for a NF2 Crew webpage was born after the Las Vegas NF2 Family Gathering of April, 1997. A large group photo was taken and then was being passed around via email.  This grew really cumbersome so someone asked if the picture could be placed on a central website for those interested to check out.  Adam Miller, our Webguy, set things in motion by designing a spot for the picture. The webpage grew a few weeks later due to a request from Amber Gamble to place individual pictures of the Crew members on the page with the group picture from Las Vegas. We further grew and expanded to having our very own full site which now includes... a FAQ page for potential members or those just interested in learning more about us, a "suggested" NF2 doctors page, a links page to many other web pages, as well as a place to "join" the Crew and the NF2 Review. -  mIRC Chats... Sunday is the official "day of chatting" here in the Crew. There are two chats on Sunday where Crew members can meet and chat with each other in addition to the email exchange. They are both intended for all Crew members, but the afternoon chat was setup to accommodate our growing circle of international friends. A very loose chat actually started way back in October of 1996. It was not until May of 1997, that things became really organized. The second chat, the one in the afternoon, was not established until July of 1997. 

Update 1999:

The Crew is operating at about 65 members as of the recording of this history. We change and grow weekly now and are also operating under a new list-management protocol. About a month or so ago, we signed up with Majordomo, which offers a more automated way of running the list. One note is sent to the "host computer" address, then that address (computer) distributes all Crew posts to the existing membership. It has really made things in the Crew much easier and they run more smoothly. The NF2 Crew remains a place of friendship, support, and information for people with NF2, their families and loved ones.

Update January 2001:

Membership of the NF2 Crew now approaches 200 members. Due to the number of postings, a second "social list" was started to handle more of the off topic posts. Our email list is managed by one list and has over 1500 posts a month. We've since lost a few crew members to NF2 , one of the originating founders and initial creator of this biography, Jordan Harlow as well as Adam Miller, the original webmaster of the crew web site.  This website has it's own domain, www.nf2crew.com 

Currently in 2003:

The Crew continues grow now hosting about 250 members. Two more offshoot NF2 Crew lists have also formed on yahoo (where we currently reside). One is the NF2 Roadcrew.  This list  is specifically for Crew members who plan trips together.  It formed when a group planned a trip to Australia in June 2002, to visit our Australian Crew members. The list remains with hopes of more planned group trips in the USA and abroad. The second list is the NF2 Ozline list.  This list is similar to the Crew except its specifically for people with NF2 who live in Australia and New Zealand..

As we enter this third year of the new millennium the Crew remains stronger than ever. We have dealt with many passings and comforted family members and each other with each one. Yet despite NF2's nature to take from us we have every reason to believe that researchers are on the brink of finding new ways to lessen NF2's effects in the near future.

Labelled with ICRA