Press

Disney World Dream Come True

February 2023
by Jan McComas

As far back as I can remember I have wanted to do the full Disney experience.  Stay at the resort, see all the parks, enjoy the food and entertainment, and just watch everyone have a blast.  I promised my daughter that when my grandson, Finn, was four, I would take everyone for a full week.  Then I was diagnosed with ALS and everything changed. 

Finn is only three but I did not know what kind of shape I would be in when he turned four so we planned to go early this year.    

We arrived on a Sunday and checked into our hotel, the Grand Floridian, in the afternoon.  The hotel was just beautiful and I had a lovely accessible room with a sitting area and a balcony.  The hotel also sent up a princess mug, and some treats from the gift shops to welcome me.  That night we had a wonderful dinner at Citrico’s and got a good night’s rest before embarking on our adventure.

On Monday, we did the Animal Kingdom.  We started the day early with the Safari tour.  Early is the best time to get there since most of the animals are out and you experience more.  At the end of the trip, we saw all the lions out on their rock and the male was actually roaring as we drove by!  It seemed like something out of a movie. 

Of course we did “It’s a Bugs Life” and the Dinosaur ride too.  Most of the day was just wandering the park and taking everything in.  The bubble makers were a hit and Finn enjoyed those.  That night we had dinner with Chef Mickey and Friends at the Contemporary Resort and had our picture taken with Mickey!

Tuesday was Hollywood Studios.  We started the day with breakfast at Minnie’s Beach Bash, which was one of the best breakfasts we had.  Of course, we spent a bunch of time at Star Wars and Toy Storyland. 

We met the Incredibles, and Merida and we took in the Beauty and the Beast show.   Dinner was in Mexico at Epcot.  Another epic day.

Wednesday and Thursday were devoted to the Magic Kingdom.  Finn loved the Princess Breakfast at the castle where he got to meet all the princesses.  The Prince Charming Regal Carousel was his favorite ride. 

We went to the Bibbity Bobbity Boutique and transformed Dragon Slayer Finn into Prince Naveen from the Princess and the Frog.  Once his transformation was complete, they escorted him over to the castle where he was sworn in as a Knight and received his sword and shield! 

However, the highlight of the day, and our trip, was when Finn pulled the Sword out of the stone!  A 3-year old was proclaimed King Arthur and the cannon went off over the castle.  It was spectacular!  A bunch of people tried before and after him and no one could pull out the sword.  We spent the rest of the day on Pirates of the Caribbean, the Haunted Mansion, Dumbo and the Jungle Cruise.  The Jungle Cruise (being a newer ride) actually had a special boat for wheelchairs with a lift that made it easy to get on!

Friday was our final day and we spent a low-key day wandering around Epcot, purchasing souvenirs, eating junk food and having a ball.  We did start the day with crepes in France and riding the Ratatouille ride – one of the best rides at Disney!  Saturday was checkout and we had a nice breakfast at the hotel and headed over to Disney Springs where we shopped and finished off our trip at the T-Rex Café. 

Just about everything is accessible at Disney World.  The only warning that I would give folks in wheelchairs is this.  Some of the older rides require you to get into a some kind of vehicle and get out – this was difficult for me and I should not have tried to ride them.  Luckily, my big, strong son-in-law was able to lift me!  The newer rides were no problem.  Also, all the bathrooms have only one (1) handicapped stall.  These are often taken by moms with children – so plan accordingly because you may have to wait a bit.

I cannot thank Team Gleason enough for helping to support this adventure.  It was the dream of a lifetime for me and my family!

Fight On | Smoky Mountains Adventure

March 2023
by Steve Koscinski

Steve was diagnosed with ALS in 2020. Six months after his diagnosis, he and his family were planning on a vacation to spend quality time together. A day before they were set to leave, a fire destroyed their home. While focusing on rebuilding their home, staying active in Jiu Jitsu, and being a dad, the family trip was put on the back burner. Team Gleason is proud to have been able to help Steve finally make it to the Smoky Mountains to spend time with his family in nature. 

Our favorite part of the Adventure was seeing our 12-year-old son enjoy himself every day, to see him be a kid without worry for just a while.

We wish my daughters could have come too, but they are older and have jobs and responsibilities, maybe next time!

The most memorable moments would probably be the sunsets out our window at Camp Margaritaville and going to the top of the Great Smoky Mountains!

There were many challenges, as the world is not really very accessible for me and those like me.

I had to do a lot of watching rather than participating, which has become a hard reality, but we put on the happy face and fight on.

This particular hotel had beds that were, no exaggeration, 20 inches from the floor, so we had to modify ways to get me up with chairs, pillows, wheelchair, whatever it takes!

This trip was all I really wanted to do though, spend time with family, see God’s beautiful creations, and breathe. Kinda the opposite on a regular basis and we were definitely sad it came and went as it was great.

Always in My Heart and Mind | Grand Canyon Adventure

March 2023
by Jack Payne and Cloie Tucker

One of our favorite Adventure quotes is “If everything went right, it would be a vacation. I don’t want a vacation. I want an adventure.” For the Payne family, they were able to experience both sides before their Adventure was over.

Jack Payne was diagnosed with ALS in 2020. Originally approved for an adventure in 2022, the family had to cancel at the last minute. When Jack was ready to travel, they reapplied for an even bigger adventure. A Grand adventure, if you will.

“Jack has always wanted to see the Grand Canyon and has never gotten the chance in life to travel,” wrote his wife, Cloie, in their application. “Being able to see the Grand Canyon would be a life memory created with Jack before ALS takes him from us. I would love more than anything to see Jack have this one last dream come true.”

Flying with his Permobil Wheelchair for the first time, the trip from Tennessee to Phoenix started smoothly.

“American Airlines went above and beyond in accommodating me by rearranging three seats to give me more room to stretch out and move around,” said Jack. “The accommodations were wonderful and in great locations.”

Staying in Phoenix, Jack and Cloie loaded up in their wheelchair van rented from Ability Center, and drove through red rock country to the Grand Canyon.

“It was the grand vacation of a lifetime, and I finally got to see everything I’d always dreamed of the Grand Canyon,” said Jack. “Also, the breathtaking view, breathtaking drive, and breathtaking scenery will always be in my heart and mind.”

Once they arrived safely back at their hotel, the effects of extreme weather on the east and west coast caused the Payne’s flights to be canceled.

Their new flights were not going to work. Since Jack was flying with his full power wheelchair, the new planes that they were put on were not big enough to store the chair. 

American Airlines customer service was able to work with Team Gleason to get them on a new flight with Delta, going above and beyond to get them out as soon as possible. That meant another day of rest in Phoenix. The Payne’s friends and family were able to watch their beloved dog another night. Ability Center was able to extend their van rental, even coming to the airport at 3 a.m. on a Saturday to pick it up. AZ MediQuip was able to push back their pick up of their Hoyer lift rental. 

Even with all the flight challenges, the Payne’s were able to come home after meeting a new lifetime friend on the plane and new memories.

“Seeing the Grand Canyon was a lifetime dream,” said Jack. “The dream allowed me to see a place that many never have the chance, especially with ALS. The fun times and incredible memories. I will cherish them forever.”

Super Bowl LVII: The Eagles’ Side

February 2023

Team Gleason was honored to help send three individuals living with ALS and their families to Super Bowl LVII with the help of the NFL. Stacy Lewin was able to make it to Phoenix with her husband and two sons to cheer on the Eagles. 

“Stacy and our family are Huge Eagles fans and watch all the games. She has always wanted to go to a Super Bowl to watch the Eagles play with our two boys,” wrote Stacy’s husband,  Dan. “She gives so much of herself, always. As her disease progresses like it has since we have hit year two, we have been looking for those family bucket list items.”

So off the family went, flying in from New Jersey to see their beloved Eagle’s play. And while their team lost, they were left with wonderful memories.

“We had such an amazing experience,” wrote Stacy. “Even though our team lost we were so happy to be there and be with the other families, especially the Fuchs who celebrated the win!”

“The biggest takeaway for all of us was to connect with another family and their children,” said Dan, “This was the first time in our two years of this disease that our children connected with others in a similar age range. Stacy and I really enjoyed watching them all interact.”

Thanks to Andrew Jo, the NFL’s Sr. Manager of Retired Player Programs, the families were also able to get down on the field before the game.

“Being at the Super Bowl is an incredible experience,” wrote Stacy. “Representing Team Gleason and ‘No White Flags!’ is incredibly memorable. Being on the field during warm-ups was also very exciting.”

“We are so grateful to Team Gleason and all they do. Their Adventure’s team is only one of the many ways they help families and individuals living with ALS. They are amazing! No White Flags!”

Northern Minnesota Adventure

May 2022 
by Mark and Pam Elsey

The most popular place to see the Northern Lights in the United States is Alaska, but what do you do when you don’t want to fly? The Northern Lights are sometimes visible in Northern Minnesota. It’s not common, but it does happen. Mark Elsey always wanted to see the Northern Lights – so Minnesota it is! Team Gleason was more than happy to send him on a winter Adventure.

Our favorite part of the trip to Minnesota was the beautiful views up north. It snowed part of the time and was just so serene and peaceful. It was a retreat from the normal busy-ness of our lives that we really needed.

It snowed on the way up there, and then there was a winter weather storm on the way back down, so driving through that was challenging! Also, there was a couch underneath the Murphy bed at the hotel, and I could not get the Hoyer lift under it, but we learned the second day that the couch could be moved, so all was well.

The most memorable part was the beautiful views from our hotel windows at the East Bay Motel in Grand Marais, Minnesota, right on Lake Superior. We also enjoyed a day trip together up to Thunder Bay, Canada. And, of course, we laugh at our efforts to see the northern lights, because it was cloudy most of the time we were there, and freezing cold when we went outside at night. We never saw them, but we had fun trying!

This adventure meant more to Mark than words could ever really say. Steve Gleason’s desire to keep living a full life with ALS, and to encourage and support others like Mark to continue doing the same, has brought so much purpose and even joy to our lives, even while we navigate this very challenging disease.

Team Gleason also helped Mark preserve his voice for his speech device, which means so much to those of us who still get to hear it, even after he has lost his voice.

Team Gleason also paid for his wheelchair mount for his speech device, purchased a shower chair for him, and provided some smart devices for our home.

It means so much to have a person and an organization truly understand what we are going through, and just as importantly, to help us through it. How can we ever thank you enough?

Grand Targhee and Big Sky Ski Adventure

February 2023
by Kevin and Vanessa O’Donnell

In 2000, I met my wife, Vanessa, while we both were working in Yellowstone National Park and after the summer season she moved to Big Sky Resort and I moved to Grand Targhee ResortI went to visit her and we had first date at Big Sky on Valentine’s Day, at a small Chinese restaurant that is now long gone. We were able to ski Big Sky the way it should be skied, long days, all conditions, going big, with big smiles. The following winter Vanessa joined me in Grand Targhee. We skied the best snow of our lives here, but always looking for that next day, next storm, next foot of pow.

Today we have three kids, 9, 8, and 1. We always thought about going back with the kids later on in life. Once I was diagnosed with ALS, Vanessa asked me where my dreams would take us. We are so lucky that Team Gleason got us back skiing at Big Sky and Grand Targhee.  

Team Gleason flew us into Bozeman, MT. The next day we picked up a rental car and headed to Driggs, ID. We made a quick stop to meet Jackie Robin, who treated us to lunch at the Hungry Moose ❤️ and a wonderful gift basket was waiting for us when we got there. Jackie was our Big Sky coordinator but also organizes an ALS fundraiser in Big Sky every year called Soul Shine. Jackie welcomed us and made sure that we felt all the love from her big heart, we did and so did our kids. We picked up rental skis in Big Sky Village and loaded up.

Once the car was strategically packed we hit the road south to Driggs. This portion of the drive is amazing, driving along the Gallatin River through the northwest corner of Yellowstone, then onto West Yellowstone and Island Park. Snowmobiles outnumber cars in the winter in this area. We continued on into Teton Valley Idaho, The Tetons to the east in full view. This was the only time we saw the Tetons because it snowed every day we were at Grand Targhee, thankfully.  

The following day we woke early to head up to Grand Targhee. Our family was really stoked the kids had never skied in the Rocky Mountains. Vanessa and I were eager to ski again in the big mountains. As we rounded the final turn and Grand Targhee came into view, the kids were in awe and slightly intimidated. The kids have all been skiing since they were 1 years old, as soon as they could walk, so they skied great but their skiing improved greatly with daily lessons organized by Sydney, our Grand Targhee organizer. We couldn’t thank her enough for all that she did. Sydney even babysat for us, so we went out on a date, all paid for.

Since the kids were in lessons and daycare in the afternoon, it allowed Vanessa and I time to spend together. We took turns, just the two of us, just like 20 years agoWe had skied 100’s of days together in our 20’s-30’s, but only a handful of days skiing without kids since.   

 

The last day at Grand Targhee, we were treated to eleven inches of fresh powder. Orla started off the day with a toddler dance party using the mini speakers gifted to us by Kristen Kern (in the gift basket from the Hungry Moose in BigSky). She held it like a boom box and danced around feeling the excitement for the day ahead. We sent the older kids to the Shoshone lift and Vanessa got in the powder line up on Dreamcatcher. I watched Orla while Vanessa got some sweet turns. She later recounted to me that she stopped on the slope alone deep in the snow as tears of joy filled her eyes, thinking she never thought she would do this again. We switched out and I was ready to rip

I was not able to ski the way I had in the past, but I had an awesome timeI also realized that I was fortunate to have been able to ski this area in the past and was extremely thankful to be back. After Orla went to daycare Vanessa and I skied the rest of the afternoon together and even saw our kids on the slope with their instructors. A day with deep snow is a day in heaven for people like us.

The next day we packed up and headed to Big Sky. The condo at Big Sky that Team Gleason organized was amazing with plenty of room including games for the kids and a hot tub ready for us. Also, Jackie made sure our house was stocked with fresh groceries. When traveling with a family, having a house stocked with food when you arrive felt luxurious. My mother joined us for this portion so she could help with Orla and we could ski.

Big Sky Ski Resort treated us to four days of skiing with our family and ski valet which made life so easy for us, keeping our skis right at the base of the lifts. The first day, the four of us skied together and were so excited to hit the slopes. We cruised long groomers, enjoyed the heated seats on the chairlifts and went on a mission to find all the terrain parks. It was a great day. My daughter said, “I will never forget this trip.” I can’t say how that felt to hear her say that. It was a perfect blue-sky day at Big Sky. 

The following day the kids had a full day of  jibbin’ lessons requested by our son Oaklee. When you ski with him you would be surprised how many things he finds to jump. In their lesson, they worked on their jumps and Indra learned a safety grab. Vanessa and I went and skied the Challenger Lift, my favorite lift from years past. Right up to the top! Feels like you’re on top of the world when you’re up there! We spent more time looking at the view then we probably ever have. We then headed over to the Shoshone outdoor hot tub and spa. We all had an amazing time swimming and playing in the water. It was single digits outside and the warm water felt great. The kids thought it was so fun to be swimming outside in such cold weather.  

As I mentioned, Vanessa and I had our first date on Valentine’s Day 2021 at an Asian restaurant in Big Sky. This time, we found the closest Asian was a small sushi place. Vanessa and I enjoyed a nice night together reminiscing of times past and about the trip’s adventures. After our amazing dinner we went across the street where a band was setting up to play. We did not see much of the band as by the time they started it was past our bedtime and we had to go. Some things have changed. 

Jackie had an amazing day of cross country skiing planned, but the plan was derailed when a vicious bug swept through our group. The duration of the bug was swift but it affected the whole crew over the next couple of days as we packed up and headed back to Bozeman. 

Team Gleason, thank you for making the Rocky Mountain Skiing Adventure a reality for our family. It truly was a life changing experience that came at the perfect time in our lives. The gratitude that our family has to Team Gleason is very hard to express in writing, these memories are written in our hearts and will bring smiles and stories re-told for many years to come. We will carry these memories, always. Giving me the opportunity to share an experience with my wife and our children allowed them to join me in one of my biggest joys in my life! 

ALS definitely changed my life and the lives of those I love, but it can NEVER take away my freedom to choose and persevere despite the circumstances. Life challenges give you the potential to grow your character to unimaginable heights; it all comes down to your perspective! Our family chooses “NO WHITE FLAGS!” 

Love,
The O’Donnell Family 

ALS Cannot Steal My Passion For Music | Phantom of the Opera

January 2023
Karen and Darin Bowman

ALS may have taken my ability to play the piano and direct a handbell choir, but it can never steal my passion for music. I’ve always been a sucker for Broadway musicals, and the Phantom of the Opera is one of my all-time favorites. I was first introduced to the Andrew Lloyd Webber phenomenon in college, when the chorale for which I was the pianist performed a medley of Phantom tunes. I’ve loved it ever since.
Thank you to Team Gleason – and to the organization’s generous donors – for sending my husband, Darin, and me to New York City to see the Phantom of the Opera at the Majestic Theatre. It was so special to say goodbye in person to this show as it gets ready to close after a 35-year run on Broadway. The week that we were there, Phantom welcomed its 20 millionth audience member. So exciting to be a part of that historical milestone!
During our trip, we stayed in the New York Marriott Marquis Hotel, right in Times Square.

We met up with a college friend who lives just a couple blocks away from the hotel and had a wonderful visit.

He introduced us to Junior’s Restaurant, which is famous for its cheesecake.

We definitely sampled the cheesecake (several flavors!), but I still find myself craving the restaurant’s loaded potato pancakes we ate for breakfast two days in a row!

In addition to exploring the neighborhood, we took in a show at the Gotham City Comedy Club and saw “Wicked” at the Gershwin Theatre. Loved it! 

We were honored to be among those selected for a Team Gleason Adventure.

Not only did we make memories for a lifetime, but we also had a chance to slow down, take a break from the day-to-day grind of work and parenting responsibilities, and just spend time together. It was wonderful.

Thanks again for all this organization does for people with ALS and their families. No White Flags!

Weekend in New Orleans

January 2023
Written by David Kolbe and Megan Hutchinson

We wanted to let you know we had an amazing time this weekend in New Orleans. We went to Audubon Zoo and did the Riverfront on Saturday. Bodie (Megan’s son) was able to get some crawfish a couple times so that made him happy. Took in way too many calories!! The game was an awesome experience. Thanks to the Gleason team for letting us take this trip. I know we all made memories that will last a lifetime!

We would say our favorite part was the Saints game of course. Although it didn’t turn out in our favor, the stadium was amazing as were all the staff there. I think Bodie was in shock.

Bodie loves crawfish and he would probably say that was his best part. We went to Deanies and they initially said they didn’t have them. I thought he was going to cry but the hostess came and found us about 15 minutes later and let us know they just got some in. He quickly turned his frown upside down

The most memorable part would be the smiles on everyone’s face. Other than that, David was pretty excited about seeing James Carvelle on the sidewalk right next to where we stayed. David is big into politics so having that happen was pretty cool.

I think the biggest challenge was pleasing everyone with food. I don’t think we all have the same taste and we tried to let everyone pick a restaurant once. Then resorted to Uber eats when someone wasn’t happy. 

The trip meant the world as this was the first trip and will probably be the last that we’ve taken as a family. David has noticed a decline in his strength recently but hopefully he will continue in a slow progression.

We really appreciate the opportunity to do this and I know the kids enjoyed it.  

Thanks again, 
David and Megan

Team Gleason would like to extend a special thanks to Sonder for an accessible stay and also the New Orleans Saints for providing accessible seats for David’s Adventure.

ALS Will Not Rob Me | Kansas City Chiefs Game Adventure

Dave McNeil
November 2022

“There are easy parts when traveling on this ALS journey. I find it easy to dwell on what I can no longer do. I also find it easy to pull back into my shell and isolate myself. It is easier to not expend what little energy I have. But by taking the “easy” road I allow ALS to rob me of amazing memories, experiences and blessings.
 
Team Gleason stepped in and allowed me to not let ALS rob me. My adventure to see my favorite football team, the Kansas City Chiefs, was a highlight of my 2 year ALS journey.
 
Amazing access and seats at Arrowhead Stadium made the trip relatively easy. Experiencing the loud and intoxicating atmosphere first hand is hard to describe. Fans and staff were so helpful.
 
A very good friend drove me in our van to the game. Experiencing this adventure with him confirmed that I will not let ALS rob me or those close to me.
 
Thank you Team Gleason for everything.”

Surprise trip to Super Bowl LVII

February 2023
by Craig Fuchs

To the Entire Team Gleason Organization:

Well, we are back home from an amazing weekend in Phoenix where we were able to attend not only the actual Super Bowl game, but we were able to enjoy so many amazing sites and sounds throughout the entire weekend.  And, we brought home a win!!  How ‘bout them CHIEFS!!!

I really don’t even know where to begin and how to adequately express my gratitude for this amazing trip.  I am going to just start typing my thoughts and I am sorry if I get long-winded. I have so much to say.

A little background. Prior to my diagnosis, my family and I had been incredibly blessed, because of my job, that we had done a good deal of traveling internationally.  I have been on 20 international trips to 25 countries and as a band/orchestra conductor, I have conducted on three continents. To say our lives have been blessed by God would be an understatement.  I have lived 100 years of life in my 60 years on this Earth.

On February 23, 2022 our lives changed.  With my [ALS] diagnosis, we had to stop and rethink our entire future as a family. Probably like most PALS when they find out their diagnosis, I spent about two weeks sitting in my chair crying, planning my funeral, and getting my financials in order.  It was a brutal two weeks.

Then, one day, I decided I was going to do my best to move forward.  While I had some difficulty walking (my ALS was limb onset in my right leg), I could still walk, talk, eat, swallow, breathe, move my hands and arms.  So, I had a limp.  Big deal.  This wasn’t going to stop me from living my life.  I actually traveled to Europe three times in the next 6 months for various reasons.  I continued to play golf (although my drives sure didn’t go as far), and I got out of bed every day determined to still live my life to the fullest and to continue on.

Now, almost a year later, I am struggling a bit more to walk.  I have to use a rollator around the house for stability, but while there is weakness in my left leg and right arm, I am still able to get around ok with adaptive assistance.  I am not sure I will be able to play any more golf, but that is ok.  I have played plenty of golf in my life and I will forever cherish my time on the course with my buddies.

I continue to thank God each and every day for what he has given me in my life and for helping me to be hanging in there with a seemingly slow progression. I am doing all of the usual things to fight the disease.  Rilutek, Radicava, drug trials and all kinds of other meds and vitamins.  They have all become part of my daily life.  I have an incredible support system and so many friends who are thinking about me and praying for me every day. I have an amazing family, led by my wife and caregiver, Kelly.  She is truly amazing. My personal mantra is “Go Forth and Conquer” and I try to live that each day.

This brings me to this past weekend.  I think your organization knows that we were selected as the family from Kansas City to represent Team Gleason at the Super Bowl.  This is just crazy.  What a whirlwind of a week.  We found out on Sunday, February 4th that we were going.  After an intense week of planning, we were on our way.  The trip was truly incredible in every way.  We were able to experience the total vibe of the event since we were out there a couple of days early.  We were able to catch up with some friends who live out there that we hadn’t seen for a couple of years.  We were able to meet up with some friends from the Kansas City area who were also there for the game, but that we hadn’t seen for over 10 years. We went to the NFL Experience and NFL Live area.  We did our best to take it all in.

Most importantly, we were able to meet the other two families who were sent by Team Gleason.  This was something I was very much looking forward to.  As you all know, unless you live in this environment, you really don’t know the full effect of what the disease brings to you and your family.  Yes, the game was amazing, our seats were amazing, and the entire weekend was something we as a family will never forget.  But I am sure you will understand when I say that meeting and interacting with those other two families was an equally meaningful aspect to the trip.

One other thing I would like to mention is that Team Gleason contacted me before we went and asked if I could maybe use some help with a mobility device.  We were struggling in our conversations to figure out how best we could navigate the situation with the devices I had.  Another huge blessing from God dropped right in our laps when you all decided to provide me with a loaner Pride Carbon portable power wheelchair for the weekend. I can tell you that we would have never, ever had the same experience without that device to get me around.  It totally freed us up to do so many things that simply would not have been possible or would have created a significant burden on my family.  Amazing. (Side note from Team Gleason: Thank you to Pride Mobility for providing the Jazzy Carbon loaner for Craig’s Adventure!)

So now that you have a snapshot of our situation and the weekend, I will start with the thank you’s. Again, there is no way in the world I can possibly begin to share the depth of my gratitude for Team Gleason.  The support you all provide and the incredible love and generosity you exhibit is beyond belief.  The flights, the lodging, the game tickets, the wheelchair….all because of your mission to ensure that people with ALS can continue to live the best quality of life possible, despite the many challenges the disease presents.  Mission Accomplished!!!

Emily was amazing.  Great communication and clarity in what was going on.  Helped us in so many ways to be prepared for what was going to take place once we hit the ground.  She interfaced with our local ALS.org chapter to problem-solve and make sure everyone was informed and in the loop.  She helped us get connected with the other families. Bravo to Emily for the outstanding work she did!!

I also want to thank Mary who I have now been in contact with about returning the power wheelchair.  She is right on top of things and is helping us work through me getting my own power wheelchair through the grant process now that I see what it can provide me with regard to mobility.  Kudos to Mary!!!

I should also interject at this point that soon after my diagnosis, I was able to get my voice banking done through the generosity of your organization.  I did not know that was even a thing, but I am all set now should I lose my ability to speak.  Thank you!!!

After researching your website, I know there are many, many more of you on the team who have specific roles that contribute to the overall success of the foundation.  Even though my recent trip only touched a few of the staff members directly, I know full well how incredibly important each and every one of you are to addressing the mission and values of the organization. Bravo Tutti for each person associated with this amazing Team. 

I had recently hit a significant stagnation point in my journey where I just didn’t know what I am supposed to be doing with my life.  I really need to find my purpose.  I was a teacher/professor for 37 years prior to diagnosis so I was very involved in making a difference in people’s lives. I miss my interactions with my students so very much and I have a definite hole in my heart since I am no longer able to mentor and guide my students in their lives.

This adventure provided by Team Gleason reinvigorated me to work harder to move forward personally and find a purpose that I can serve.  I am not sure what it is just yet, but I am determined to find a way to re-engage my passion for helping others in life.

I can only hope that this message at least begins to touch the surface of my intense gratitude to you all.  There is simply no way to put into words what my heart is feeling.  May God shower blessings on each and every one of you and continue to bless the work you are doing for our ALS community.

NO WHITE FLAGS!!

With deep love, respect, and gratitude
Craig Fuchs

Thank you to the NFL Events Department for providing the Super Bowl tickets and Andrew Jo, National Football League Sr. Manager of Retired Players Program, for coordinating the experience.

Hawaii: Diving for Joy

January 2023
Written by Michelle Scott-Diehl

My husband, Steve, has always wanted to scuba dive in Hawaii.

After spending 31 years as a firefighter and rescue diver, he has never really got to enjoy scuba diving. Hawaii has always been on his bucket list.

We spent our 21st anniversary finding out he had ALS. After retiring, we had planned on traveling. 

Thanks to Team Gleason we got to spend some time together and make some lasting memories. My husband wanted to go to Hawaii to scuba dive and go see the USS Arizona memorial. We got to do that and more. 

I found every wheelchair accessible place on the island. While we were in Hawaii, the north shore had some big waves which we got to see at sunset. My son got to enjoy some one on one time with his dad. Something they needed. 

The resort we stayed at was the nicest place we could have gone; you didn’t need to leave the resort at all for anything and everything was wheelchair accessible. They had everything you could possibly think of: multiple pools, restaurants, convenience stores, and so much more. It was nice if we didn’t feel like leaving the resort, we had everything very close to us and convenient.

Even though we didn’t need to leave, we still did because there were gorgeous parks and great restaurants within walking distance. The amazing greenery was probably one of our favorite things to see every day. This trip will be remembered for a lifetime and there isn’t enough “thank yous” I can say. 

While diving we got to see some Hawaiian sea turtles and lots of fish.

It’s totally amazing that my husband got to scuba dive even with ALS and not having use of his legs.

Trident Adventures in Hawaii is amazing. The crew we had were 100% well trained and knew how to help us out. 

The Hilton Garden Inn was very handicap friendly, from the lobby to the room. Thanks Team Gleason for the memories!

No White Flags! 

Christmas with the Cardinals

May 2022 December 2022
by Steve Abels

Steve Abels wasn’t going to let an ALS diagnosis get in the way of taking his family to see his nephew, Cameron Thomas, play in his rookie season with the Cardinals. Team Gleason Adventures was thrilled to send Steven to Phoenix for the Cardinals vs. Buccaneers Christmas game.

Being able to see my nephew play in the NFL has been a dream of mine since he entered the NFL. 

My favorite part of my Team Gleason trip was being able to celebrate with my family and watch my nephew play a game in his rookie season in the NFL. Watching Cameron play was amazing. We were all very proud to watch his dreams come true and give him all our support. 

The best part about it was that he hit Tom Brady! Twice! Best Christmas gift ever to be able to watch him make those big plays. I felt very honored to see that one of my family members made it to the NFL and supports me through my disease.

The most memorable part of my trip was my nephew dedicating his “My Cause My Cleats” to the ALS Association. On top of that he let me keep the cleats that he wore in the game!

It meant a lot to be with my family at such an important time in my nephew’s life. It also gave me the freedom of travel which really helped me continue to fulfill my passion of travel and sightseeing.