With the funds from The Gleason Initiative Foundation, we were able to bring Stephen Finger and his wife, Cara to Jazz Fest this year in New Orleans, LA! See below for his blog about the weekend.
When I saw the JazzFest lineup come out a couple of months ago, my jaw dropped. Friday included Jason Isbell followed by the Avett Brothers. My two favorite bands playing back to back in New Orleans no less. However, our spring was already pretty packed. I had a work trip and college reunion. Cara had a couple of the work commitments. We were headed to the beach with the kids. After a couple of calm months in the early spring we were heading into a crazy stretch. Then a couple of days later I got an email from Lauren Bowman from Team Gleason inviting us down. Too good to be true. So I got up the nerve to ask Cara about adding another event to our schedule and luckily the thought of a quick getaway with few New Orleans meals thrown in was enough to tempt her into saying yes.
So we were down there last week from Thursday to Sunday. My parents came down and looked after the kids in Columbia and we snuck away for our getaway. Maybe we don’t do these enough. A chance to take a deep breath and enjoy each other’s company. With everything going, that can get lost in the shuffle.
The trip could not have been better. We got in Thursday and had two fabulous meals. We have eaten well in New Orleans before, but our dinner Thursday night at Clancy’s just seemed perfect. The food, the champagne, the atmosphere, the company. After a breakfast of beignets on Friday in the French Quarter we headed over to JazzFest. Michel Gleason texted us a list of “must eats” and it did not disappoint. After living in the Carolinas for the past 12 years, I have learned to take pork very seriously. She recommended the cochon du lait. Amazing. I mean you are at this music festival, great music, good times, and when you want a bite to eat you are blown away by the food. The cochon du lait would be a treat at any price, at any restaurant, but at JazzFest it is just that much better. Both Jason Isbell and the Avetts put on great sets. We met up with my aunt and uncle who have lived down there forever and happen to be about the two coolest people we know. Way more interesting than Cara and I will ever be. They served us a great shrimp supper after the festival and then snuck us into their daughter’s art exhibit (http://www.chillplease.com/). I mean, how cool is that?
A couple more great meals and another great day at the festival and then we had to pack up and head home. From purely a getaway perspective, this was a perfect trip. Tremendous meals. Cara got to sleep in. I got to see two of my favorite bands. We got to spend a few days doing nothing but spending time together. No kids. No touristing. Just us together eating and listening to music.
But for all the fun we had, still the best part of the trip (other than spending time with my wife) was getting to meet the folks from Team Gleason. We met up with them Friday afternoon during the Avett’s set. They seem like the epitome of New Orleans. Great people, who love to have fun, and with the utmost sense of community. They rolled into the festival as a pack. Blair and Lauren, the two full-time Team Gleason employees, along Steve, Michel, her brothers, their wives, their friends etc.. Talking with them, you knew you were a part of something special. We knew we were not alone. They are devoted to improving the lives of families facing the disease. Hanging out at the festival, not only do you see how everyone in the city is inspired by and has rallied around Steve, but also it seemed that half the people that walked by were old friends now helping with Team Gleason. People who, inspired by Steve, were working to support his family, and all families dealing ALS. We, as members of the ALS community, are incredibly lucky to have had them adopt our cause, and more importantly it shows how one individual can rally people to act.
As my uncle was driving us home on Friday night we passed by St. Margaret’s Hospital, home of the Team Gleason House for Innovative Living. This facility is equipped to allow people with ALS, whose minds are perfect but are limited physically, to live more independently. People who can still lead productive lives in the right technological environment are able to control everything around them through their computers. Today they announced the Saints owner, Tom Benson, donated $5 million to establish an endowment to cover the facility’s operating expense. Steve says he sees no reason why every NFL city couldn’t have a similar house. If the community of people supporting the cause continues to grow, there is no reason they can’t.
Getting to meet Steve was an incredible honor. One of Team Gleason’s taglines is, “Awesome ain’t easy”. It is clear that there is nothing easy about his situation, but that makes everything he does that much more awesome. He couldn’t communicate through his tablet in the sunshine. How is this possible? In talking to people living with ALS it is clear that making people’s lives easier, makes them live longer. There is nothing more essential to quality of life than the ability to communicate, but we haven’t figured out eye tracking technology that works outside? This seems like something a few grad students could figure out. These are solvable problems that Team Gleason is working to solve to improve people’s lives. But even with this limitation, it didn’t stop Steve from being incredibly gracious to Cara and me. Incredibly gracious to everyone who came up to say hi. It didn’t stop him from making jokes at his wife’s expense. On Saturday, he tweeted that he didn’t feel up for going to JazzFest but then followed it up saying “ALS is a training for wanting only what you have. As you have less, learn to want less. Find new, creative ways to explore and expand.” I know nothing in my future will be easy, but after meeting Steve I know there is no excuse for not making it awesome. Thank you to Steve and to all of Team Gleason for an incredible weekend. No White Flags!
Karen wrote to Team Gleason and expressed an interest in coming to New Orleans for Mardi Gras. Mardi Gras is an adventure for people without disabilities, much less those with disabilities. She seemed to have a great spirit. So… we were all in!
With the money raised for The Gleason Initiative Foundation, we were able to secure hotel room, a van, and a Mardi Gras package for Karen and her husband Bruce.
Read below for a recap of their trip:
Here’s my story—
After 18 months of foot drop, back surgery, balance issues and 5 different specialists, on June 20,2012 I was diagnosed with ALS at the age of 51. Funny thing, although it was devastating news, it was almost a relief having an actual diagnosis. I decided I will try to work harder to get through my bucket list.
I have always wanted to see New Orleans and visit during Mardi Gras. I thought that I would start planning for Mardi Gras 2015 by contacting the only person that I knew of who lived in New Orleans and was also in a PWC so that I could get a little insight on where to stay, where to go, and what to see. That’s when I contacted Steve Gleason/Team Gleason.
Much to my surprise and amazement, I was contacted by you/Team Gleason and offered a chance to come to Mardi Gras 2014. Team Gleason graciously provided our room and van and an awesome spot on the parade routes to see the festivities. We were already planning a trip to Nashville around the same time as Mardi Gras so we decided to re-route and add a few days to our vacation and go to New Orleans.
When we arrived we were met by Lauren Bowman. She was so friendly. She presented us with a great bag of goodies to get us ready for Mardi Gras. We stayed at the Embassy Suites and had a brand new accessible room. The general manager and staff were all extremely friendly and helpful.
We strolled around the City and saw so many things. Beautiful historic homes and buildings. We went through an old cemetery. They don’t have anything like them in Phoenix. We went through the French quarter. We attended 5 parades which were all unique and so much fun. We even got to see Hugh Laurie. We ended up with so many beads we had to give 3/4 of them away because we couldn’t bring them all back with us. We even got to meet the Mayor of New Orleans, who by the way, was extremely friendly and kind.
The entire experience was one I am so thankful for and one I will never forget. My only regrets was that we didn’t stay longer and see more of the area and more of Louisiana. My other regret was that we didn’t get an opportunity to meet Steve, Michel and Rivers. Steve is going through the same illness as me but the difference is he is only a year older than my oldest son. So, why I can relate to him as a fellow pALS, my heart breaks for him and his family as a mother and grandmother. For someone so young to go through this is wrong. The fact that he has chosen to reach out to others and put a face to this horrible disease is admirable. I applaud his courage as well as that of his wife.
Thank you Team Gleason for all you did for me and my husband and for helping check off another item on my bucket list. I’m not sure if I would have made it to New Orleans without you all. Please know that if ANY of you ever make it to the Phoenix area, please call on us. We will try to be as graciously hospitable as Team Gleason was to us.
I am attaching a few photos that I will probably send under several emails.
All our love and support,
Karen & Bruce Lowe
We love the story of Rich and Tina Wagner. As you will read below, Rich reached out to Team Gleason to ask if we could give his wife a weekend getaway for all the help she gives him daily as his caregiver. However – when we offered her the trip, Tina said she would rather spend the time away with Rich.
With the money raised for The Gleason Initiative Foundation, we were able to send Rich and Tina on a relaxing weekend getaway. See below for letters from Tina and Rich.
We learned about Carla Shearon through Sabrina Schalley. She’s a Patient Services Director at “ALS in the Heartland”, which serves those impacted by ALS in Nebraska and Western Iowa. She’s also a childhood friend of Rian Emmerson, a Spokane member of Team Gleason.
From Rita, Carla’s daughter:
I’m not sure I would have ever used the word “adventurer” to describe my mom when I was young. My parents worked very hard to make sure my brother and I were always in good schools, and never went without anything we needed. This rarely left extra money for traveling, and little time to go on adventures. Now that I’m grown I can appreciate what I never saw before- the adventure in raising two children, the bravery required to forge a path that would allow those kids to go even further in the world than she did.
My mom was diagnosed with ALS in 2008, three years after I moved away from Kansas, where I grew up, to Hawai’i, where I live now. In that time she’s traveled all over the country, from Minnesota, to Nevada, to Louisiana. In all of the years that I’ve lived here we have never been able to work out the travel logistics for her to come visit me where I live. More than just about anything, my mom wants to come to Hawai’i, and see where I live, meet my friends, spend time with her new son-in-law, and experience for herself some of the adventures we go on.
One of the most exciting things a person can do on Oahu is a doors-off helicopter tour, which showcases the majestic Ko’olau mountain range, stunning beaches, and the tallest waterfall on the island! I’d like to take my mom to the Pali lookout and show her the entire windward coast. In the winter there is amazing whale watching, as the humpback whales migrate to the warm waters of Hawai’i to calf. I’d love to take her to the north shore of O’ahu during a winter swell, so she can feel the power of 40 and 50 foot waves crash and shake the ground!
There’s no question my mom deserves to come to Hawai’i, especially in light of how much she sacrificed in order to insure that I could make a great life for myself. If I could do it alone I would, in a heartbeat.
With the funds raised for The Gleason Initiative Foundation, we were able to send Carla and her caregiver, Rick, to visit her daughter, Rita and son-in-law in Hawaii. Steve always wants include adventure in their trips, so we were excited to be able to send the four of them on a helicopter ride!
Dave Martin, a TG board member from Spokane, spearheaded a TG adventure for the Saints/Seahawks game at CenturyLink field.
With the help of Dave’s Company, Summit Capital, Anne and The ALS Association Evergreen Chapter, Connie and Casey and The Seattle Seahawks, and Steve’s friend, Ray Hattenburg, the night turned out to be a success. Besides for the Saints loss. :)
Thanks to all of you!
The schedule of the day went as follows:
11:00 am – Ray and I are going to stop by to meet you and your family prior to the game
4:30 pm – Pregame Sideline starts – please plan to be dropped off at attached designated area by 4:15. Anne from the ALS Evergreen chapter has been kind enough to coordinate you transportation to and from the game. Thank you Anne!
5:00 – We will go to our seats to enjoy the game. Max Unger and the Seahawks were kind enough to secure Team Gleason our tickets in Section 209 row AA. Thank you Seahawks!
I wanted to thank each and everyone of you for making the seahawks game such a memorable day for Jonathan and myself. Your kindness and generousity was emotionally overwhelming to know that so many people care about our family. Just knowing we were going to the game was so exciting but finding out we were going on the field put it over the top. Then, Ray and Dave came over to our house to meet us before the game and gave our girls new dolls and played with them. It put huge smiles on their faces and they asked us if Dave and Ray were their uncles. While at the game, we were treated like celebrities from food being provided to even being able to go to the front row of the game with the Summit Capital Gang. Everything from start to finish was amazing. Thank you so much for giving Jonathan and myself this memory of spending quality time together. The experience was incredible but its even more priceless to meet such incredible and inspirational people. Thanks again and hope to talk again soon.
We learned about Nathan Moats from Post Falls, ID from Mike and Jackie Gleason in Spokane. He has a zest for life and a strong love for his daughter Kassy and family.
With the help of Ann Marie Byrd with Catholic Charities of Spokane and the money donated to The Gleason Initiative Foundation, we were able to help Nate secure a wheelchair accessible van to get out and explore the world.
Thanks to everyone involved!