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 persons with albinism. See it here: This year, to celebrate and promote International Albinism Awareness Day, we will be posting albinism related graphics, links and information on all of our social media. NOAH had several other ideas that would be good to do to participate and promote albinism awareness.Read More →

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 do was to meet and connect with an adult with albinism. The very first person with albinism we met after Lyra was born was a local woman named Heather Kirkwood.  The first time we met Heather was at our NOAH Bowl-a-Thon in 2007.  Since then, she has joined us atRead More →

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 with hearing it or using it. But… *sigh* A few months ago I began doing some serious thinking and self-analyzing over my issues with the word albino.  What prompted this time of deep thought/reflection was the sudden realization that Lyra would be starting Kindergarten in the fall, interacting with lotsRead More →

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) who have IEP’s and the dozens of IEP meetings I have prepared for and attended.   Over the years I’ve made plenty of mistakes, but through them learned a lot. I now go into IEP meetings with much more confidence and competence and with far less fear than I didRead More →

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 or AI, probably already know my opinions on this subject, so for some of you… I am preaching to the choir.  As for the rest of you, my friends and my family, I mean this in the kindest most loving way possible… Please do NOT refer to my daughter LyraRead More →

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, soda, popcorn, shoes. 2) $57.99 6 people on a lane, two hours of unlimited bowling, soda, pizza, shoes. RSVP to Donations will be accepted at the event, or can be made online prior to the event. You can donate to our state team, or create your own team byRead More →

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 turned out good and it presented a clear and positive message. Below is a clip from the special.  The full episode can be viewed on the ABC website from this link: Full EpisodeRead More →

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.   This would be why you haven’t seen any new posts over the last several weeks.  🙂 The Kansas City mini-conference is the 5th in a series of regional events across North America in 2009.  For more information on other upcoming NOAH events, visit the NOAH Events page. I haveRead More →

In Tanzania, a country in east Africa, more than 28 people with albinism, including a 7-month old baby, have been murdered.  Their body parts are being sold to witchdoctors to be made into potions.  It is a widespread belief that these potions bring riches and have magical powers.Read More →

Recently, our family has been reconnected with the Parents as Teachers program.  We first participated in the program 5 years ago in a different school district, with Dominick. Parents as Teachers (PAT) is an early childhood parent and family support program serving families throughout pregnancy until their child enters kindergarten, usually age 5.  Here are the goals of the program from the PAT website: Program Goals * Increase parent knowledge of early childhood development and improve parenting practices * Provide early detection of developmental delays and health issues * Prevent child abuse and neglect * Increase children’s school readiness and school success This FREE earlyRead More →