Dear Subscriber,

This past weekend found me in the scorching heat of Phoenix, Arizona. Let me tell you, people might think it gets hot in Albuquerque, but the fact is that we're at 5000 ft of elevation here (more like 5500 at our house), and there is a limit to just how hot it will get. But in Phoenix, "The Valley of the Sun", there is no relief to be found. The temperature while I was there? A toasty 110 degrees. Let's just say I wasn't in Phoenix for the weather. :-)

It was a great trip though. Noss Galen Baby was invited to a conference put on for parents of children with Albinism hosted by the National Organization for Albinism and Hypopigmentation (NOAH) and the Arizona School for the Deaf and the Blind. The purpose of the conference was to give parents information and resources they might find helpful in caring for their children's special needs, as well as updates on the most recent scientific findings in the field. I'm sure you know what Albinism is in general, but just in case I'll say that Albinism is the lack of pigmentation in either the eyes or both the eyes and skin.

Since children with Albinism (and adults, for that matter) have especially sensitive eyes, we were asked to come and set up a table selling our Baby Banz Sunglasses (www.NossGalenBaby.com/banz.html), which have a UV 400 rating, meaning that they block out 100% of all UV rays (A, B, etc). Most of the children there walked in the door already wearing nice pairs of sunglasses, but the parents who bought our Baby Banz primarily did so because they have a safe, comfortable neoprene strap instead of hard plastic legs that can poke little eyes and aren't adjustable.

Anyway, the conference was great and I learned a lot. (Ali and the girls didn't make the trip, but our cousin Jeremy came along to keep me company on the long drive) Everyone has heard of Albinism, but I don't think most people really know much about it. In this week's newsletter, I would like to pass along some of what I learned in Phoenix.

1) People of all races can have Albinism, and it is not more prevelant in any given race than in any other. I already knew this on an academic level, but somehow I was still surprised when many of the attendees of the conference were Native American, black, or Hispanic. In this respect, Albinism can actually be more of a challenge for children of darker-skinned ethnicities because their physical appearance is so different from their siblings and friends. With white children, the difference in appearance is much less obvious.

2) Albinism is genetic, and most types of Albinism must be passed down from both parents for the child to have Albinism.

3) People with Albinism do not have pink or white eyes. They usually have either blue, green, or even hazel-colored eyes.

4) Low-eyesight is usually the biggest challenge facing people with Albinism, and their "low vision" is probably not what you think it is. For example, the world does not appear "blurry" to them as it would for me if I took my glasses off (I'm near-sighted). Rather, the world appears to have a lower "resolution" for them. The eyes of a person with Albinism have fewer rods and cones than the average eye does, so it is as though your television screen had fewer, larger pixels than it does. Your television shows would still come in clearly, but you would not be able to make out the details as well. So for example, children with Albinism have a difficult time with games such as ping-pong that involve a small, fast-moving ball, but can do much better with games involving larger balls such as soccer or basketball. Activities that do not involve any small pieces of equipment, such as swimming or gymnastics, can usually be enjoyed with little or no difficulty at all.

5) Skin protection is usually the second greatest challenge of Albinism. It is recommended that people with Albinism plan all of their outdoor activities in the morning and evening, avoiding the times of 10am - 3pm, which is when UV levels are by far the highest. And whenever participating in outdoor activities, it is recomended that they wear sunscreen in the SPF 20-30 range (that tells me that nobody else should probably need sunscreen above SPF 30, either), and hats, long-sleeve shirts, and pants (preferably white or other light, reflective colors) are also important protections.

So that is my quick, five-point lesson on Albinism. I hope you enjoyed learning more about it. Each of us has our own unique challenges to work through in life, and it was inspiring to see the parents and children at the conference in Phoenix tackling their particular challenge head-on.

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Have a great weekend, and wear your sunscreen!

Sincerely,
Paul

Paul & Alison Martin
Noss Galen Baby LLC
www.NossGalenBaby.com

Copyright, Noss Galen Baby LLC 2005