Thursday, July 20, 2023

MDA Camp- Virtual Summer 2023



This was my first year at MDA camp.  I had considered going in person, but have never stayed away from home by myself.  This year I had Tibbs so I had thought about it.  With Tibbs and I just becoming a team this spring and having to register and go in early summer.  I thought maybe I would try virtual camp this year to see what is is like, and maybe go to in person camp next year. 
The week before camp started a big box of supplies arrived at my door!  I was so excited to unbox all the fun crafts, snack recipes, and instructions for the week.  I had a lot of anticipation after seeing everything for it to start. It included a few crafts for every day, a Kiwi Crate with a sling shot basketball hoop to build and play, snack recipes to make for my family.

Some of the activities were designed to do on my own, while others were designed to do with my family or online with other virtual campers.  Some of my favorite crafts were the paper lanterns, DIY scratch art, and decorate your own sunglasses.  

 While snacks and food are not my favorite thing. I love cooking and creating things for my family.  My favorite snacks to make were the frozen smores, and the white chocolate marbling dipped Oreos.  My brother and sister were able to help make them and willing samplers!

 

Every afternoon I got to have cabin time and meet with other campers that were also doing MDA virtual camp.  We got to meet others, talk, play games, and hang out.  Everyone loved hearing about Tibbs and he got to help me do the activities at home.  Some of the other campers had service dogs, and pets that I got to see and hear about as well. In the middle of the week I got a surprise swag bag package delivered.  I got a camp T-shirt, portable straw and holder, sticker, and apron.




MDA camp is something that lets me meet and do activities with other kids just like me.  I had a great week and know it is something Tibbs I will look forward to doing again next year. 








 

Fort Pickens Exploring


If you are going to Pensacola you might want to stop by Fort Pickens in the Gulf Islands National Seashore to explore.  If you have a National Parks Access Pass, or a Fourth are a 4th grader and have your pass for the year you can get in free!  

  



I love the National Parks and am on a mission to visit all of them with my family. Fort Pickens is a historic fort.  While visiting you can follow the numbered signs on sidewalks and fairly easily maneuver around the fort due to improvements they have made.  They have added many sidewalks and smoothed out rough surfaces to help view the fort easier. The numbered signs can tell you where to go and if you download the app in advance you can read about each sign location and its history.  Some of the sidewalks had some sand on them and would be a little difficult to maneuver in a manual chair.  


  

The first thing that we saw other than the brick structure itself were the cannons.  At first I did not think I would have access to get up close, but if you keep going you can find the path that circles back to allow you to get up close to explore the cannons.   There are a few places with stairs that you cannot go up.  I found it interesting that they had long passageways that they filled with gun powder so they could blow it up to destroy one side of the fort if needed.   The fort shared about its history, even the parts that they are not proud of.  It talked about holding Geronimo there away from his homeland and everything that he knew.  They also talked about the slaves building the fort and the slave owners being paid for their work.  The history is important to understand so we can learn from it.  The main location had a gift shop where you can get your National Parks stamps and souvenirs. They had up to date bathroom, water fountains, and even a dog watering fountain.  Their was a museum and a few older buildings that were not wheelchair accessible.  They had a ramped dock that led out to the water that Tibbs and I enjoyed walking and exploring on. They had several other locations that you can use the app to learn about and make stops along the way out of the park. It was very hot with lots of asphalt so make sure to have water and a bowl, dog shoes and mushers cream. As this was our last day in the area we took our time to enjoy then started off on our journey home.  



















 

Rare Disease Legislative Advocates Youth & Teen Advocacy Day

Rare Disease Legislative Advocates Youth and Teen Advocacy Day took place on June, 18th 2024. I had the opportunity to speak about important...