Hello everyone!
I'm happy to report that we had a wonderful experience at the 2nd Annual 1P36 Deletion Conference!
This year it was held in Boston, MA! We went down on Thursday September 11th. We being me, my mom (Diane), my sister (Lynn), Sammie's sister (Darby) and Sammie of course! Steve, Sammie's dad came down on Friday. We met up with some families that were already there and had a lovely dinner with them! It was so wonderful to see the people I had met last year in Florida and to meet the families that I didn't get to meet last year!
On Friday we went downtown to Faniel Hall and Quincy Market..where my mamma ordered some Chowda and I tried it even though I hate pretty much everything that comes out of the water! I have to admit that fresh Chowda is a lot better then the crap we have here! haha We had a lovely day..it didn't rain..we saw some street performers and Kate and Emma were with us! When we returned to the hotel it was almost time for the meet and greet to start! Very exciting! Almost everyone going to the conference arrived at the meet and greet at some point. We reconnected with many friends..including Sammie..who was either really excited to see Joseph or thought he was looking into a mirror! Probably one of the cutest moments between children that I've ever seen!
We all got up early Saturday morning because the conference started at 8am! We didn't mind though because we knew there was lots to do and lots to learn!
Our first speaker was Dr. Cody PhD in Human Genetics. Her own daughter is diagnosed with - 18q. She started a Charitable Organization for all 18q chromosome anomalies and has been successful in raising money for research and support! It was very exciting to listen to her and I know she got a few of us ready to start really working on our own 1p36 organization. It has taken many many years and lots of hard work for her to get the organization where it is but I know that we have a lot of dedicated parents ready to contribute to our own organization! Myself being one of them! Check our the 18q website at http://www.chromosome18.org/
Our second speaker was Dr. Shaffer. She has been studying 1p36 Deletion Syndrome for some time and has probably published or is at least mentioned in almost everything you can find about 1p36! She is a wealth of information on genetics, chromosomes and 1p36. I learned soooo much from her at the first conference that I had forgotten from my Human Biology class! I was glad to have Sammie's dad, Grammy and Aunt there to hear her educational information! Of course my sister is studying to be a nurse so she was familiar with most of it!
The third speaker was Dr. Perszyk from Florida. He is a geneticist and has been taking care of a friend of ours named Abbie! He was also at he first conference and took down some data on each child to try to put together a growth chart for our little ones. Most of them don't get close to the normal curve for many many years as far as growth.
After the conference ended we all tried to figure out the best way to make a 1p36 non-profit organization and people had wonderful ideas! I'm happy to report that the process is still going on! We are narrowing down a name for our group and then we will start in the rest of the important stuff! We also came up with places for the 3rd Annual 1p36 Conference and I believe that it will be in Indianapolis next year! My sister has already said she will visit her doctor for some Zanax because she hates to fly but would not miss it for the world!!
I already miss my 1p36 family and can't wait for next year!
