The WAGR Weekend hosted by the Cox family was absolutely wonderful. They, along with their community, saw to it that we were all taken care of for meals, activities and childcare. Truly amazing what these wonderful people did for our group. The Hampton Inn was a lovely hotel. The staff and accommodations were excellent. They had a large comfortable sitting area in the lobby as well as the breakfast area where we could sit and talk throughout the weekend.
We were greeted by Miss Jenna Cox and she saw to it that we were signed in, given our information packet as well as our welcome to WAGR Weekend gift bags, which were loaded with goodies. She honestly blew me away!
Meeting families for the first time always makes me nervous but that melts away quickly once we start talking about our kids. It’s so impressive listening to how “gorilla” each parent is when it comes to their child. Dr. Sarah Appel did a wonderful presentation on Aniridia and Low Vision. She addressed many issues and concerns that many of us have as well as answering our questions.
Dr. Joan Han from the NIH and her assistant Carolyn Menzie also did a presentation on the first phase of the research on WAGR syndrome. I’m thrilled that the families were able to meet Dr. Han and her research assistant Carolyn Menzie in person. They are wonderful people and I think our families participating in the study will be very comfortable dealing with them.
It was awesome seeing all of our children ranging in age from 18 months up to 35 years. The fun part was getting to interact with the kids and getting to know them. I just ate up each and every one. I found myself sitting and getting flooded with memories of when Irma was a youngster. Twenty years goes by very quickly.
Many thanks to Kelli, Tom, Jenna, Jacob and their community for helping bring us all together.
Irma is already planning for next year. Thinking about all of you and hoping we meet next year.