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…Read More →

Heather, Lyra, and Dominick bowling for NOAH’s Bowl-a-Thon Okay, so not EVERYONE in Kansas City participated in the 2008 NOAH Bowl-a-Thon yesterday, but the ones who did, had a really great time! I’m terrible when it comes to event organizing, but I’m a pro at procrastinating. This year our bowl-a-thon team had a total of 8 team members, including our 5 family members. 😀 That’s 2 more than we had on last years team…so I’ve made progress. Unfortunately, one of our team members, 5 year old Mark, came down with a cold and stomach flu on Saturday, so he and his mom Debbie were notRead More →

I have recently been talking with Kansas City area film maker Xavier Dejesus. He is making a documentary about albinism called “Can You See Me?” As a parent of a child with albinism, he intends to present a positive and realistic representation of albinism. He also wants to focus on the social aspects of albinism and the challenges parents face as they raise a child with albinism. Parents of children with albinism and individuals with albinism will share their experiences, their difficulties, and all the emotions that go along with them. They can share what they’ve learned, what has helped them and what makes themRead More →