International Albinism Awareness Day

| June 13, 2015

Today is International Albinism Awareness Day! Last Year the United Nations General Assembly adopted a resolution establishing June 13th as International Albinism Awareness Day. This date was chosen since it was on that day in 2013 that the UN adopted its first ever resolution on albinism. On May 5, 2015, the UN dedicated a website to […]

Dare to be Rare

| September 12, 2012

When Lyra was born, her diagnosis of albinism was a shock to all of us. The weeks and months following were a time of confusion and worry about what it all meant.  Neither my husband nor I had ever seen someone with albinism in person.  One thing that we really wanted to be able to […]

Albino Revisited

| August 15, 2011

Most everyone knows how I feel about the word “albino”. It’s no secret that I avoid it like the plague. And I’ve never been one to keep my opinions to myself, see Here and Here.  The word albino evokes so many different and very strong emotions in me that I don’t think I will ever be completely okay […]

Tips for Successful IEP Meetings

| January 3, 2011

Below is the long version of an article I wrote that was published in the latest issue of Albinism Insight.  This is not a comprehensive list.  I’m not a teacher, although i do have a teaching degree.  The advice I give is based on my experience as a parent, having 2 children(ages 4 and 14) […]

Don’t Call My Child Albino!

| April 23, 2010

With everything I am about to say, it is my intention to represent only the opinions of me and my family.  While I do refer to other parents, my statements do not reflect the views of all parents of children with albinism or individuals with albinism.  People who know me and my family through NOAH […]

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Be a Super Hero, Bowl for NOAH!

| February 3, 2010

Be a Part of the 2010 NOAH KC Bowl-a-thon! Join Team Kansas Saturday, February 20, 2010 from 1:00 – 3:00 pm College Lanes 10201 College Blvd (69 & College) Overland Park, KS 913-451-4799 $5.00 per game and $4.00 for shoes or packages available: 1) $47.99 6 people on a lane, two hours of unlimited bowling, […]

20/20 Special on Albinism

| October 6, 2009

This week, ABC’s 20/20 did an hour long special about albinism and the crisis in Tanzania, Albinism: Caught Between Dark and Light. NOAH had been in contact and working with ABC News A LOT over the past year, providing them information and connecting them with families and individual with albinism.  Overall I think the special […]

Kansas City NOAH Mini-Conference

| July 14, 2009

I don’t believe I’ve ever mentioned this on this site, but I am now a member of the NOAH Board of Directors.  As a board member, one of the projects I’ve been working on is planning a local 1-day mini-conference to be held on on August 8th at the Kansas State School for the Blind. […]