Ok so yesterday was really pretty much epic! Today though we have a lot of MPS conference activities. So after we all got up and started to get ready we made our way to the breakfast area. Once we sat down we got to chatting with a fellow MPS society member who was actually from the UK (I believe). It was their first Family conference. Shortly after the meetings started.
First thing was the Welcome which was only about fifteen minutes. The first meeting we saw was hosted by Dr. Muenzer (This is the man who led the clinical study on the drug that helps keep me alive), and it went over Potential new therapies and treatments for the different forms of MPS, they are currently looking at ways to enhance performance of my treatment for patients with mental problems, and the need to get past the blood brain barrier, and they have some upcoming trials in motion.
The following meeting was updates on research led by Dr. Matthew Ellinwood, and in my opinion it expanded a little more on the research parts of MPS, while still explaining the need for future therapies.
Then we listened in on the Orthopedic issues meeting led by Dr. William Makenzie. Honestly it wasn't exactly what I was expecting. When it started dealing with MPS2 though it did mention the carpal tunnel hand surgeries, even showed a picture of the hands cut open (I'd never seen that part..). I guess I was hoping on info as to what I can do to further improve. Got remember just how far I've come already though.
So after three meetings and getting up at seven am I decided to sneak out and have a little break. I grabbed triston, and we made our way to the bus stop. We were headed to Downtown Disney for a very important errand, and grab some lunch. While waiting for our bus he was a lifesaver and dug out of his bag some candy! We discussed the meetings, and he seemed to sound like he was learning stuff and enjoying it too. Finally our bus came. Triston was surprised to see how accommodating the bus was for handicapped people (for those that don't know the bus will tilt, and has a built in ramp, and designated chairs that can be folded up to make room for wheelchairs or scooters. Once we are all loaded up we headed off, we had about three hours until we needed to be back.
Once at downtown disney we made our way just looking around, priority was food. We ended up choosing planet hollywood seeing as how he had never dined there before. We got walk in seating which again blew my mind. Overall lunch was pretty good, I know I enjoyed it. Plus its fun to see all the hollywood memorabilia. After we were done we ran into D-Street (Vinlymation store) I didn't buy anything though I wanted to haha. We were running low on time so we started to head back, luckily our destination was on the way. The Art of Disney store. It is one of the few locations that has an embroidery machine. We were getting Mickey ears! (My first pair if you can believe that). We both decided the classic black, with our names on the back. We started to have them shipped to our room, but found out it wouldn't be delivered till the next afternoon (we'd already be in the park by then) so, we ended up waiting for them to be done. Now racing to the bus as we were running late donning our new ears.
We made it back a little late but, we didn't miss the meeting that was being led by Dr. Muenzer Management of MPS and other related diseases. From what I could tell it was mostly a question and answer round with him form the audience, people asking specific questions. After that meeting let out the next one came in. Shire updates. They basically told us what they could of future studies,a nd what they were looking for in the near, and distant future.
Now that the meetings were over we retired back to our room until the banquet started. Once we were all ready, we made our way. I'll just say this upfront the food in my opinion was a little too fancy for my taste. Luckily our waiter snagged us a plate of tater tots haha. Throughout the meal they acknowledged members and accomplishments other society members had achieved over the year. Several people were dressed up for the after Prom event. Honestly it was a nice ceremony all in all though, plus the dessert by far made up for the meal in my opinion. Then it turned out they had one last small surprise for us over in the next room while they set up for the prom. Before we went to the room i got a picture with Barbara (who was head of the society and knew me back from when I was first diagnosed). In the other room waiting for us was CHARACTERS!! in total there was about nine I think they start out as four and then switch out with a new group. We ended up getting to meet Goofy, I managed to get Triston to see Cinderella (seriously owe him for that), and lastly we got to meet Chip & Dale. That was an awesome surprise the society pulled out of their sleeves, and a great way to meet characters outside the park. After we got the pictures we voted on skipping the prom and just heading back to the room as I had to have to get up pretty early for the SPIRIT young adult meeting in the morning, and he will get to sleep in some. So while there were a fair amount of meetings today we did get some disney experiences!
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