Author’s Note: This post is rather specific in nature, it is intended to provide information and support for people attending The NOAH conference in St. Louis July 12-15, 2012. NOAH is a national non-profit that provides information and support for people with albinism (albinos) and their families. Members and interested professionals gather every two years to learn the latest information and share experiences. Over 800 people are expected to gather in St. Louis next week. What follows is my personal perspective and does not necessarily represent the policies or perspectives of NOAH or it’s leadership. I hope it is helpful.

NOAH’s 2012 Conference is just days away. I’ve been to every NOAH conference and still, I get excited every time I read the schedule and pre-conference materials. Attending a NOAH conference is like attending a family reunion with people you’ve never met. Despite the fact that most the people in attendance are strangers, everything and everyone are very familiar. It can be overwhelming. Overwhelming in a good way, seriously when have you ever seen so many people that look like you in one place? Overwhelming in a more challenging way; wait, which shirt is my kid wearing? Overwhelming in terms of the amount of information shared both actively (in the sessions and in the conversations with other attendees) and passively (by observation of all that goes on around you).

To minimize information overload, take a look at the schedule at-a-glance in advance and make some general notes about which sessions appeal to you. Upon arrival, you’ll be given a conference program with full descriptions of each session and you can refine your choices from there. Don’t be afraid to take a break to catch your breath and process what you’ve heard. Not all learning goes on in the sessions. While the they are chock full of useful information. Some of the most powerful experiences happen in the halls between sessions or at discussions around the lunch table.

Be prepared for an emotional roller coaster. You’re only human if you experience anxiety going into a new situation. Be patient with yourself it will pass as you grow more familiar with the hotel and the conference space and as you meet other attendees in the same boat. There is a map of the conference space online. Take a moment to print it out and familiarize yourself with it.

Conference highs come as you share experiences with others and reinforce that you are not alone. There is a thrill that comes from learning new information and maybe finding a solution to a nagging problem. There’s fear and frustration as you hear tales of the challenges that some people face dealing with schools and employers. The albinism community is diverse as the population of the U.S. Not everyone deals with challenges in the same way. Not everyone is in the same place on the journey towards albinism acceptance. Try to keep an open mind and respect the differences as much as you appreciate the similarities. Keep the information that is useful to your situation and disregard the rest.

This is going to sound obvious, but remember that most of us can’t see well. You and I hit it off on Friday, but when I see you again on Saturday, you’re wearing a different shirt. I’m not sure if you are the same fantastic person I spoke with before and I am leery of making a fool of myself until I’ve invaded your personal space to read your name tag. <grin>

Now, a few thoughts on how the conference is run. I’ve attended every NOAH conference. I’ve was local conference coordinator in Boston in 2000 and National conference chair for the following three conferences (Concord, CA, Atlanta, GA and Minneapolis, MN). Have you ever seen the carnival act where the performer is spinning plates balanced on the tops of long polls? Running a NOAH conference is JUST like that. Unlike a corporate conference, registration fees do not cover the costs of executing the conference. A conference for over 800 people is now managed by two staffers and as always, executed with the help of a horde of volunteers. It is worth noting that neither staffer works full-time for NOAH and the conference doesn’t even account for 1/4 of their job responsibilities, although I can assure you, that some days it feels like the conference is 110% of their job. Where conference planning is concerned the focus is on providing a top-notch, safe, educational and enjoyable experience for the minimum amount of money.

When you read hotel banquet services menus, they always list the price of an item and then ++. That means plus service fee, (fee charged by the hotel to cover the cost of staffing, and facilities, typically 18-20%) AND plus local and state taxes (anywhere from 5-20%). It is the ++ that drives the cost of a cup of coffee from $3.50 to over $5 and when you multiply that $5 by two-thirds (not everyone drinks coffee) of the adult attendees at this conference you are rapidly approaching $2,000 just for morning coffee! When you consider that the cost of dinner typically STARTS at $14.95++ for chicken caesar salad (no beverages, no desserts), I hope you can understand that most non-profits including NOAH, prefer to spend money in ways that better serve their members.

When thinking about the programs offered or how things are run, please remember that these are volunteers giving up their own personal time to educate and enrich the albinism community. Before you complain think about how much time you have to work on a conference?

Now, for some practical tips:

• Wear layers. Hotel temperatures are NOTORIOUSLY fickle. One room might be a deep freeze while another feels like a sauna. Having a sweater or a light jacket will improve your conference experience.
• Bring your favorite data collection device. Doesn’t matter if you are old school (pen and paper) or high tech (iPad and wireless keyboard), have something with you to capture information. There will be a lot of it.
• Bring your favorite data sharing device. You’re going to meet a lot of people some of whom you’ll want to stay in touch with. Bring business cards, Post-It® notes, or your phone. So you can give your contact information to others.
• Always allow yourself extra time to get to and from conference sessions. Elevators can be a bottleneck (they are also a great place to meet people). Until we develop effective transporter beams, it is better to add 10 minutes to your planned departure time to insure you arrive on-time.

I have special memories from every NOAH conference. At the first national conference in Minneapolis, the teen discussion group ran so long we had to relocate to another room twice because no one wanted the discussion to end. In Chicago ’92, the young adults took over a helicopter pad. In Philadelphia I reconnected with the man who would become my husband. There is always at least one memorable elevator experience. It Atlanta, my four year old daughter met another little girl who had “alvinism”, just like her. Despite having been to every NOAH conference since she was born, that was the first time she made the connection. In D.C. in 2010, my son found his own “posse”. No doubt about it, NOAH conferences are magical. I can’t wait to see you all in St. Louis.