Uncategorized

MOXieeeeeee

I went down to Tampa, USF, for my 5 month check up of Reata 408 Phase 2—extension (MOXie) October 10th and heard the most amazing news…This drug is moving onto phase 3 and has high hopes to be FDA approved!!!

An FA drug has never made it past its final phase with positive results—Reata’s MOXie will likely become the first treatment for FA; and I am a fortunate SOB to be apart of it! History in the making FOR SURE

Participants have reported improvement in their balance, coordination, endurance, dexterity, speech, swallowing…I mean this is huge! I am not sure if I am able to publicly share what I, personally, have noticed as far as improvements, so, to play it safe, I am not going to write about it; however, you might be able to notice a change in me 🙂

The medical side of the positive results of MOXie:

https://www.reatapharma.com/press-releases/reata-announces-positive-topline-results-from-the-moxie-registrational-trial-of-omaveloxolone-in-patients-with-friedreichs-ataxia/?releaseyear=2019

Let’s all take a moment to give a HUGE thanks to everyone playing their part in the FA community🥰

On the traveling side, I wanted to share as close as I could to every second spent traveling to Tampa from St. Louis.

I used my handy dandy timer to document all the timing of my travel:

Wednesday October 9th, my aunt picked my mom and I up from the house and took us to STL lambert airport.

We parked and got out of the car @ drop off at 2pm. From the time we checked in, going thru security, to getting to our gate, it took a whopping 32 minutes and 53 seconds.

Now, the fun part…waiting and waiting and waiting. Our flight was scheduled to depart at 4:10pm, but now delayed by 40 mins🙄 oh, joy.

Great, unexpected news–our plane was actually ready before they anticipated! I get to pre-board and luckily, get one of the first few rows. I boarded at 4:04 pm and we took off at around 4:30pm. We landed at 7:38 pm (an hour ahead of STL).

Tampa airport is big (at least bigger than Lambert) and it takes elevators and shuttles to get your luggage and a rental car, so…time consuming, indeed!

From the time I got off the plane>pee>shuttle>elevator>luggage>shuttle>rental car desks>elevator>car garage>starting up our rental car=1 hour 6 minutes 38 seconds, we were officially able to leave the airport.

We were about 40 minutes from our hotel/where we wanted to grab our very late dinner and we had to zoom to get to the restaurant for takeout. They said we had until 9:35 to grab our order or we were going to be SOL. We arrived at 9:29, with 6 mins to spare!

We got our delish Thai food (always my fav) and headed over to our hotel. By the time we checked in and went up to our room, it was 10:03pm.

After I ate, I HAD to shower. After being on a plane, I feel like I have 27383 germs on me, and cannot wait for a shower!

Finally, at 11:11pm my head hits the pillow😴

October 10th:

I woke up at 6:30 am and we left our room at 7:36 am. Luckily, the University is a hop, skip and a jump away and we arrived at the valet @ 7:49 am.

My appointment was at 8am.

I partaked in the usual physical tests, some questionnaires and a wonderful visit with the coordinators, nurses and doctors.

My team wearing their FAn shirts!!! They’re awesome❤️

I wrapped up and headed to leave at 11:38 am.

Phew! What an exhausting past 22 hours.

Since our flight to head back to STL, isn’t until the next day at 8pm, my mom and me had some R&R to do. It was beautiful and hot, just how I like it😊 so we soaked it up laying by the pool and eating outside as much as possible. If you know me, I loooove hot weather and absolutely despise the cold, so I literally took every minute of the sun and warmth I could.

We said our “see ya later, Florida “ Friday October 11th and arrived back home to the cold😩😩

Even though I enjoy traveling, it takes a lot of energy and time. Especially when it’s a “quick” few days, it’s exhausting. I go from mom>single woman>traveler>patient>tourist>back to mom life in a 3 days.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s