vision Restoration research and friends in Iowa
After we left Utah for the first part of spring break, we headed to Iowa. Because there is some pretty incredible vision restoration research going on there. Along with some…
How to get through your Sophomore year with Low vision
School is out here in the desert. The last day was the day before Memorial Day weekend. So let’s talk for a minute about my hero Lucy. Let’s talk about…
how to get involved in BBS Global Awareness Day
BBS (Bardet-Biedl Syndrome) is a genetic “rare disease” that affects approximately 1 in 250,000 people around the world. It causes all kinds of things to go haywire in the body,…
some of the BBS families in our village
I was talking to a friend the other day. A friend who also has a teenager with some special needs. It was so good to be able to relate on…
Lucy’s syndrome is a “rare disease”
Just wanted to connect people to the BBS Family Association Instagram page which is HERE. Because yes, today is Rare Disease Awareness day. And any type of awareness about syndromes…
Guess what? The turkey trot is coming!
Remember when it was the first ever Global Awareness day for BBS? (Yeah, if you don’t, I wrote about it back HERE.) Well, we have our own little local BBS…
A little extra awareness about Lucy’s syndrome
When Lucy’s choir teacher asked me a few weeks ago to tell him more about what’s going on with Lucy, I realized we needed a little teacher meeting. Knowledge is…
weekend wrap-up
I am going to see if I can start to stay a little more up-to-date around here. Like, let’s talk about what happened this last weekend. Started out with Lucy…
halloween amidst flying to and from sunsets
Halloween was just plain weird this year. I’m sure many can relate. Holidays are just different during this pandemic in general of course. But there was also some weird melancholy…