Hello, 2019 I'm thankful for this new year, full of new adventures and a new set of challenges. It's been six months since I came on here to write anything, the last six months have been focused on family and work. I feel like I haven't had the bandwidth for anything else, fitting in a … Continue reading 2019 Here we go!
Tag: Ocular Albinism
The other day a friend asked me, "What does ARD stand for?" After just coming out of a 2 hour ARD meeting you think I would know but in fact, I had no idea. And yes, I am the kind of person that goes out into the world without having all the details even when … Continue reading ARD
“The Future’s Bright the Futures Orange.”
The above campaign slogan was used in the United Kingdom for the phone company Orange. It won't mean a thing if you are reading this and you are from the US. I felt like this slogan was blasted on the TV/radio for years and after not hearing it in a long time as my family … Continue reading “The Future’s Bright the Futures Orange.”
Today is almost over here in Houston Texas and it is certainly over for many of our friends and family on the other side of the world. If you didn't know today is Giving Tuesday, a day of giving moved by the power of social media and collaboration. It is a day to celebrate and encourage … Continue reading Giving Tuesday
A curious thing started happening, Nash's hair has started changing colour. I say curious because I didn't think this could happen to a person with albinism. The featured image shows the darker areas of Nash's hair at the roots. We knew the type of albinism he has means he has some pigment but I just … Continue reading Changing pigment
What is the idea behind IDEA?
What is the idea behind IDEA? For those of you living elsewhere in the world this Federal Law won't concern you much but for those of us living in America who have kids with disabilities, it is a pretty important law. I have to admit that even though I have a kid with a disability … Continue reading What is the idea behind IDEA?
International Albinism Awareness day
Today is International Albinism Awareness Day. In 2014 the General Assembly adopted a resolution proclaiming, with effect from 2015 that June 13th be known as International Albinism Awareness Day. People with albinism all over the world face discrimination particularly those living in Africa. Albinism also continues to be misunderstood socially and medically even here in America. I … Continue reading International Albinism Awareness day
Skin Cancer Awareness Month
For those of you who don't know May is Skin Cancer Awareness Month. In this family, we know all too well the risks associated with too much sun. One of the first topics I decided to write about when I started this blog was sunscreens in a blog post of the same name. Applying sunscreen on … Continue reading Skin Cancer Awareness Month
Summer is nearing
Well hello there world! I think I have had writers block or maybe just children block, whereby my children block me from doing anything that doesn't involve them in some way. It feels like forever since I sat down to even open up my blog. I have to say we have been having fun though. We … Continue reading Summer is nearing
A short and sweet post to share this gem of a booklet produced by the Nystagmus Network: nystagmus-booklet-for-teachers-january-2017. The Nystagmus Network is committed to distributing information about nystagmus, supporting the research into a potential treatment and raising awareness of the condition. I have learned more about Nystagmus in the past few months since I connected with this organization than … Continue reading Nystagmus Network