Posted By admin on July 23, 2008
A couple of weeks ago, our family attended the 2008 NOAH National Conference in Las Vegas. I was getting ready to write this post and I was having trouble remembering everything I learned at the conference. We had a great time and I learned a lot and met a lot of people, but honestly, it’s kind of like this picture above…a big blurrrrr…
We arrived in Las Vegas the afternoon of Thursday, July 10th. As we were checking-in and just looking around taking it all in, Lyra kept going up to other little kids with albinism saying “Hi Lyra…Hi Lyra…” It was cute and sad at he same time. It was fun seeing all the moms I’d talked to and gotten to know on the NOAH forum and seeing all the kids and babies I’d seen so many pictures of. I even got to see some of the kids who’s photos had been in the slide shows I’d made.
Friday was the first day of sessions. I had volunteered to help with Sun Gear Swap that morning answering questions and taking/organizing clothing and sunglasses that people were donating. This gave me another opportunity to meet and get to know some people, including Susan DuBois, editor of the new book Raising a Child with Albinism: A Guide to the Early Years. This book is AWESOME and I think EVERY parent of a child with albinism should have it! I believe it will be available to purchase from the NOAH website in the near future.
Sessions we attended that day included Genetics of Albinism, Albinism Research, Computer Tips and Tricks for People with Albinism, Parents: Taking Care of Yourself and a Parent Discussion group. If you asked me what I learned that day, I’d be at a loss for words. There was just SOOOO MUCH information to take in that to pinpoint one specific thing I learned would be difficult. All that information is stuffed somewhere in my brain though…ready for me to pull it out when I need it. 😀
Most of that day and most of the conference really, I hung out with my good friend Jill, who has an 18 month-old son Andrew who has albinism. Friday evening our families went out to dinner together. It was a lot of fun and the whole night went pretty well overall…until the end. To make a long story short, Lyra puked up her meal all over the dinner table, we didn’t have a change of clothes, then later back at the hotel, Troy also threw-up. We’re still not 100% sure what caused it, but we think it may have been food poisoning. They both started running a fever and Troy had a headache for pretty much the rest of the conference. Dominick and I never got sick. Because they were sick, Troy couldn’t go to any sessions on Saturday and Lyra could not go to the daycare. I did manage to attend 3 sessions that day. I had volunteered to moderate the first session I went to that day, Positive Exposure presented by Rick Guidotti. To say that was COOLl would be an extreme understatement. Rick is an amazing person and has done and continues to do incredible things for the albinism community. The other 2 sessions I attended Saturday were What Parents Need to Know About IDEA, and Adjusting to Low Vision and Looking Different.
By Sunday morning, Troy and Lyra were feeling better. We all got to attend the breakfast and closing session, during which they announced that the 2010 NOAH Conference location would be Washington DC. I’ve never been there…I can’t wait!
By far, the best and most memorable thing I got out of the conference was just seeing, meeting, and talking to other parents of children with albinism and adults with albinism. To be able to see and and be around so many people who you can really connect with…people who understand everything you’ve been through and are dealing with…is just indescribable. It was amazing and wonderful. I got to know and share stories with SO many parents. It’s as though we’re all kind of like a big family. One experience I had that was really special to me was when I saw this group of girls with albinism. They were SOO Beautiful!!! It just made me feel better…for Lyra. They were pretty and happy and just full of life. They weren’t weird looking or awkward or self-conscience AT ALL. As a parent, you just think about things…and how life will be for your child as a young adult. I needed to see these girls. They made me more hopeful, and made me smile.
Meeting Rick Guidotti was just like WOW! He even found time to snap a few pictures of Lyra during the conference. I can’t wait to see them! I also had the chance to meet many of the adults with with albinism who I’d got to know through chatting and email over the last couple of years. It was good to hear their perspectives on some of the issues associated with albinism and just to hear their life stories. A few other parents and I even got invited to a breakfast Saturday morning to meet the NOAH Board of Directors. They are a great group of people and I’m so grateful I had that opportunity to get to know them.
I can’t wait to do this all again in 2 years at the next NOAH conference.
The picture at the beginning of this post was taken during the NOAH group picture on the last day of the conference. Even though it’s difficult to make out any faces, it shows you just how many people with albinism attended the conference. In case you’re curious…Lyra is sitting on the lap of the woman wearing a bright turquoise shirt, sitting right in the middle of the group.
Here are some more pictures from the conference.
Here is a short video of the Sunday morning breakfast crowd and the slide show and 2010 conference location announcement.
Be prepared to puke if wobbly camera scenes make you nauseas. I was moving the camera all over the place at first. I’m sure it will be terrible for those of you who have albinism to watch with all the quick movement. I apologize for my awful camera skils.