Thanks to the funds donated to The Gleason Initiative Foundation, Team Gleason was able to assist John Jaeckel and family with his New Orleans bucket-list Adventure – thank you! Here’s what John had to say:
“My dear friend from the Wisconsin Chapter asked me if I had anything to do on my bucket list. I thought for a little while and confidently replied I wanted to see the Gleason House in New Orleans. We were connected to Team Gleason and the planning was underway. We had a travel agent book our travel and help plan our trip to NOLA. They coordinated flight and hotel accommodations as well as providing us with a rental van so I could get around the city. I was so lucky to take my wife, daughter, and son in law with me. In early October, I took my wheelchair it’s maiden voyage in the air. Traveling with ALS, as many pALS know, is no joke. We need to pack my wheelchair, charger, breathing machine, shaking machine, etc. While my wife had lots of packing and my family had lots of bags, it was all worth it when we landed and our adventure begun!
One of our first adventures was taking part in the Gleason Classic. For those of you who haven’t participated, it’s worth a trip to NOLA. There was a 5K, food and drinks, and twerking–yes, you read that right and it was super awesome! One of the highlights was meeting Steve, Michel, Rivers, and Paul at the event. These people eat, sleep, and breath ALS advocacy; I was so inspired! That event was cut a bit short with Hurricane Nate making landfall. One thing to note, living through a hurricane had always been on my bucket list as well so I was really excited to cross two things off this week!
We were lucky enough to spend 6 days exploring the wonderful city of New Orleans embracing the food, culture, and history as guests of Team Gleason. Possibly the most impressive thing about NOLA was the food. We had the chance to eat many unique foods that are specific to NOLA and the culture. We ate at some of the famous and some of the less famous; honestly, all were equally as good. We did a food and history tour and then a cemetery tour. Each of these experience helped us better understand NOLA and why the city is such a magical place. We also spend a day at the World War II museum which was such an impressive display of memorabilia and information about the war. If you haven’t been, you must go and make sure to watch the film! My son in law and I were completely consumed with all the information in the museum. We also were able to get a tour of the Gleason House which provides around the clock care for 9 ALS patients. They have state of the art technology and a staff with incredible knowledge, love, and passion for ALS patients. This allowed me to see firsthand how Gleason Houses or models like this could be operating around the US or even the world! It’s really hard for me to pick a favorite thing from our trip so I’ll narrow it down to two, in no particular order. First, the food was incredible and unlike any week of eating I’ve ever experienced. Second, was experiencing the Gleason Classic. One of my greatest ways I spend my time is doing events with the WI ALS Association. It was wonderful to see how Team Gleason does events–they really bring the energy and passion!
As I said this was my first trip taking my wheelchair on the airplane. We also flew with all of my supplies. One of the greatest surprises of the trip was how well my wheelchair did on the historic streets of NOLA. Everything was pretty accessible but we did need to be aware of accessibility with every tour, restaurant, and activity we were interested in. One of the reasons this trip was so enjoyable was because of the handicap accessible van that Team Gleason provided for my family. One thing you take for granted is not being able to jump in an Uber or go about traveling without thinking or planning ahead of time.
Having ALS is a challenge, there is no doubt. It has stretch me physically, mentally, and emotionally. Some days are better than other. But when you surround yourself with great people, great things happen. I am so blessed with the people I have in my life. I want to thank Steve, Michel, and everyone at Team Gleason for giving my family an incredible trip with memories that will last a lifetime. The work Team Gleason does for patient care and ALS advocacy is inspiring and should encourage us all to rise to the challenge. From the bottom of my heart, thank you for a priceless gift! #nowhiteflags #notquietly “
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