Press
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
ALS Will Not Rob Me | Kansas City Chiefs Game Adventure
Dave McNeil
November 2022
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.
World of Coca-Cola Tour
October 2022
By Christine and Paul Anderson
Waterford, MI
A while ago a friend told me about the Team Gleason Foundation and encouraged me to apply for an Adventure. My husband and I had watched the movie Gleason and were familiar with Steve’s story, but not so much his foundation. For a number of years, I had wanted to go to the Coca-Cola Museum in Atlanta. So, I decided to apply to Team Gleason and see if they would send me there. I was completely shocked when my trip was approved. I told everyone I knew that my dream was coming true. So excited!
Emily, Team Gleason’s Adventure Coordinator, communicated with me and worked out the details. And then the itinerary envelope came. And the T-shirts. Oh boy! Oh boy! Oh boy! So much excitement I could hardly stand it. My husband arranged to take time off work, and we were really, really going to go.
Neither one of us had been on an airplane in over 30 years and were not sure of the procedures, so we decided to stay in a hotel room near DTW airport the night before our morning flight just to make sure we would get there on time. In the morning we got up early, had the continental breakfast, moved the car, and took the shuttle bus to the airport with our one suitcase.
ALS has taken away the use of my arms but I can still walk short distances, so we made it into Detroit Metro Airport and managed to figure out how to get our luggage checked in and get our boarding passes (DTW is not particularly new user friendly). A Delta employee pointed across the way to a phone on the wall to call for a transport chair, and in a bit someone showed up and took us to our gate. Had a little delay at the security checkpoint as I could not go through like most people. The guy left me sitting in front of the scanner and I had no ability to get out of the chair, walk through, raise my arms… So I sat and waited. Somebody finally noticed, moved me to the side and gave me a seated pat down.
Well, we made it to the gate, and after a time I was wheeled down the ramp to the plane, where I was able to stand up and walk down the aisle to our seats. I took the window seat. It was a wonderful flight on a beautiful day, and we landed in Atlanta in no time. We were met on the ramp by a person holding a tablet/sign with my name in one hand and a transport chair in the other. She cheerfully guided us to the baggage claim area and then outside to the ride share transportation zone.
A Lyft driver got us from the Atlanta airport to the Hilton Hotel, showing us the World of Coca-Cola building right around the corner. To our surprise, the hotel was right across the street from the Georgia Aquarium. Very cool. 7th floor indoor and also outdoor pools and jacuzzi. We could see the Mercedes Benz football stadium right there. And we were also right by Centennial Park, dedicated to the 1996 Olympics which were held in Atlanta.
We were early for check-in so we had a bite to eat at Johnny Rocket’s down the street.
Well, we got checked in and unpacked, explored the hotel and area a bit, and settled in for the night. “I can’t believe we are actually here.”
The next day we slept in a bit, which is a luxury for my husband who is normally up at 4 a.m. We had breakfast at the hotel and around 10:30 headed out for the ¼ mile walk across the plaza to the World of Coca-Cola for our scheduled 11:00 guided tour.
They saw us coming, decked out in our Team Gleason Adventure T-shirts, and greeted us enthusiastically. Treating us like royalty, our guide had a transport chair waiting for me. My face was starting to hurt from smiling so much. Oh my! Unbelievable! What a great time we had!
We saw so much and learned so much about the history of Coke, from how it was created, how the logo came to be, the bottles, vending machines, marketing, and corporate philosophy. We saw the Olympic torches used in the eternal flame torch runs which Coca-Cola sponsored, and I got to hold the torch that Mohammed Ali held when he lit the flame at the opening ceremony of the 1996 Olympics in Atlanta. We tasted various coke products from around the world (who knew?), and ended the tour in the gift shop, where I added just a little to my collection of Coca Cola items.
Then we walked across the plaza to the new Coca-Cola Cafe for sandwiches and reflection on how blessed we are. The rest of the day was spent at Centennial Park and back at the hotel.
We had one more day left to spend in Atlanta on our adventure, so we decided to check out the Georgia Aquarium.
We slept in again, and then went out for a late breakfast at a highly recommended southern breakfast place. I had peach cobbler French toast and he had peach chicken waffles. It was wonderful. The Georgia Aquarium was basically across the street, so we headed over there and entered the world of sea life. It was great. We hadn’t even known this place existed, but it turned out to be the 2nd highlight of our trip. So many strange and wonderful creatures.
Dinner was at the Atlanta Hard Rock Cafe a few blocks away. Thank you Lyft driver who rescued us, as we had overestimated my ability to walk that far (it was uphill).
One more night at the Hilton, a Lyft ride to ATL where we were whisked through a special security screening line for those in transport chairs, and we were on our way home.
Thank you Team Gleason for providing the air transportation, hotel accommodations, the Lyft gift card, and the private tour of the World of Coca-Cola. This adventure will be forever remembered.
A very special thank you to World of Coca-Cola and Coca-Cola United for providing a private tour for Christine.
Make Every Experience the Best | Elkins Family Hawaii Trip
Written for the Elkins family by John’s niece Tawni Nohr
Finding out you or someone you love has ALS can be one of the hardest things to handle. Team Gleason has helped our family to go on our dream vacation.
My uncle and his daughter always planned on going to Hawaii after she graduated. Thanks to Team Gleason they made their dream come true earlier than we thought. They helped our family to get to do and see things we never could have dreamed of. Every day was a new exciting adventure that we all were very excited about.
While in Hawaii, we met very nice people throughout the whole trip. Every time we got in or out of the pool or the beach, people constantly were offering to help us. It was nice to be around people willing to help without even knowing what he was going through.
I never really thought about how people were treated with a disability until I had someone with a disability in my family and it is truly heartbreaking when someone can just cut off people in a wheelchair or not hold the door for them and not have a second thought.
It was very nice to have people constantly moving out of the way, holding doors, and just helping in general. I want to thank everyone who even did the smallest thing to help because even the smallest thing can make someone’s day easier for them, so thank you.
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.
We had many memorable things that happened during our tip that none of us will ever forget. Starting off on our flight to the islands we got to see the erupting volcano that is only seen once in 35 years.
It was a very cool thing to be able to see. As soon as we got to Hawaii it was late, so we went to the ABC store and bought some food and sat by the ocean and had a picnic. It was awesome for just us four to sit at the beach and relax after our long travel day.
The next day we went to breakfast in the resort and sat at the pools and beach.
On the third day we went on the helicopter ride, and it was probably one of the coolest things we did.
The fourth day was supposed to be the luau but because of the rain, we went the next day.
The day of the luau came, and it was so cool and fun. I’m glad we decided to do it.
On the last day we were all sad our trip was at the end, but we still made it a great day. We relaxed and enjoyed the resort. It was a great way to end an amazing trip.
My mom, cousin, uncle and I are very thankful that we got to share this experience with each other. It made us all closer than we were before. Family is very important, and we are also happy we got to experience it together.
The trip turned out the best way it possibly could have. We did not have any difficulties or challenges that we had to overcome, and it was a very nice relaxing time.
As my uncle says, “live like you’re dying,” make every experience the best. You choose your perspective on life, make it a good one and be happy with what you have done. Thank you again Team Gleason. We never could have done this without you.
No White Flags, Ever! | Grand Canyon Adventure
December 2022
by Rhonda Baumann
The Baumann Family adventure trip to the Grand Canyon exceeded our wildest dreams and was over and above our expectations! Nothing could have prepared us for the emotions that touched our senses, the wonder that flooded our minds and the breath-taking beauty that permeated our very souls. We walked, hobbled and rolled the Grand Canyon trails together as a family that filled us with immeasurable joy and renewed our appreciation of life, faith and love.
You will see the life, love and joy in our amazing pictures, but I want to be completely transparent in this blog and don’t want to hide the uneasiness behind our smiles. We escaped to the Grand Canyon not even considering all the worries, fears and anxieties about my recent ALS diagnosis we were carrying with us. We also had the added dilemma of our daughter’s recent season-ending sports injury (torn achilles). That being said, I’d like to begin this blog by introducing its main characters and describe the healing we experienced during our time together in the Grand Canyon.
This picture was taken during the descent of Toll Trail, the last trail we hiked that particular day. It involved about a dozen flights of stairs similar to the ones in the picture except some of them did not have handrails, the steps were irregular in size and there was snow and ice to navigate around from a previous snowstorm.
We were tired, but determined to get to the lookout at the bottom of the stairs. The one person missing in the picture is my husband, Kirk. That is because he took the picture. He’s always the one behind the scene carrying all our stuff, planning, surprising and thinking of ways to make my life easier!
In fact, Kirk is the person behind the whole Grand Canyon Adventure and reaching out to Team Gleason! I love him dearly, but he is the classic “caretaker” who sacrifices his own needs for ours. Our youngest daughter Saige, who hobbled down the stairs with her crutches, never uttering a complaint which is typical of her personality, but she was definitely carrying a hefty burden on her shoulders and stuffing her true feelings.
Our older daughter, Galena, whose arm I am clutching on for dear life, is also a caretaker like her father and a very motivated controller. She becomes anxious with life events that she cannot manage or control so it was particularly hard for her as she processes my ALS diagnosis. And then there’s me, struggling to keep up in a fast-paced world that won’t slow down, but always smiling and presumably happy. And I am naturally happy and positive most of the time, but I admit to using my smile and humor as a tool to assure everyone that I am okay even though sometimes I’m not.
So, we got to the lookout at the base of all the stairs carrying with us all our baggage of burdens, hurts, fears and anxiety. As we gazed at the awesomeness of the Grand Canyon from yet another viewpoint, our eyes focused on the hiking trails far, far below us. We had to really focus our eyes on the distant maze of trails and sure enough, there were people on the trails and they looked as tiny as ants! Secretly, I was jealous of the tiny people on the trail because they were able to hike those trails and surely they didn’t have any problems like ours. But from my perspective, I couldn’t see their problems! That’s when I was reminded that there is a much greater perspective than my own. A perspective that is greater than the Grand Canyon!
That’s when I got a tiny glimpse of God’s perspective. For the Creator of the world, all our problems are small; not insignificant, just small. Our perspectives are so small, narrow and subjective to our own experiences and circumstances. I shared my thoughts with my daughters and my husband and we were all humbly reminded that there is a power much greater than ourselves. It didn’t happen immediately, but throughout our week at the Grand Canyon we were all able to see our short sighted perspectives and become aware that there is a much greater perspective and purpose for all of us. As we slowly loosened our grip on fear, control, burdens and anxieties our faith began to grow, our hope was renewed and our love flourished.
One can’t go on a trip to the Grand Canyon with the people they love most in this world and not be affected on multiple levels. A person can never be the same after experiencing the ever-changing colors on the canyon walls, the breathtaking depth of the canyon floor and the dazzling sunsets that cast a mixture of shadow and light in slow motion fashion before darkness falls and the stars shine so vividly in the sky. Our Grand Canyon Adventure was so much more than a “get away” to a beautiful place. It was an invitation for us to do some much needed healing and a reason to say,
“NO WHITE FLAGS!!”
After we landed at Sky Harbor International Airport in Phoenix, our first stop was to see Kaleigh B. at the AZ ALS Chapter who arranged a transport chair for our trip. Thank you Kaleigh!
Next, we were off to The Grand Hotel in Tusayan which is located at the entrance of the South Rim of the Grand Canyon. It was a very long travel day for all of us, but we made it to our destination at about 8:00 p.m. Thank you Team Gleason for wonderful accommodations!!
The next day we were off to the Grand Canyon Scenic Airlines for a bird’s eye view of the Grand Canyon. During our 45 minute plane ride, we saw incredible aerial views of the stone gorges of the South Rim and the Colorado River winding between the ancient walls. Captain Jack was our pilot and he was wonderful!
Later the same day, we went on a Buck Wild sunset tour in a Hummer! Our tour guide/driver was Alice and her energy and enthusiasm was outstanding. As the sun moves over the Grand Canyon, the colors change throughout the day, and you can see the most beautiful colors at sunset. Our family agrees that there is no better time to witness the canyon’s beauty than at sunset.
Our next day was spent exploring the Grand Canyon Village. We went to the Ver Kamp’s Visitors Center, the amazing Hopi House and had dinner at the historic El Tovar Hotel Restaurant.
Then, we spent a day touring every trail and lookout point on Hermit Road. We even, quite literally ran into 4 Elk that were licking the salt off the sidewalk we were walking on to get back to the rental car! Fortunately, they decided to let us use the sidewalk again after about a 20 minute wait.
Our last tour was with Canyon Ministries which took us over to the far East side of the rim where we visited Mary Colter’s Desert View Watchtower. Our tour guide, Eddie, included one last amazing sunset for us to witness.
We had to say goodbye to the Grand Canyon on Christmas Morning, but took with us treasured memories and a new perspective on life! A life with healing hearts and the hope of many beautiful tomorrows! Thank you Grand Canyon! We headed down to Scottsdale by way of Sedona and soaked up the sunny and warm weather.
We spent the final two days of our trip in Scottsdale at the Hilton Vacation Club. The weather was absolutely gorgeous and tropical by our standards! We took in the sights and sounds of Old Scottsdale, toured the shops and enjoyed delicious food!
Team Gleason, Thank you for making the Grand Canyon Adventure a reality for our family. It truly was a life changing experience that came at the perfect time in our lives. Words cannot express the gratitude we carry with us in our hearts for the gift you have given our family on Christmas 2022!
It is true that ALS definitely changes your life and the lives of those you love, but it can NEVER take away your freedom to choose to persevere despite the circumstances. Diversity of any type, has the strange potential to grow character to unimaginable heights; it all comes down to a choice! This family chooses “NO WHITE FLAGS EVER!”
Love,
The Baumann Family
Adaptive Scuba Diving in Hawaii
September 2022
by Dave Warnock
I’m thankful to Team Gleason for providing me with one of the best experiences of my life. I had always wanted to scuba dive, and never got the chance to, and then when I was diagnosed with ALS, I thought, perhaps I never would. Then I heard about Team Gleason and their foundation that provides experiences like these for people like me. I signed up for this experience and was delighted to hear that I have been approved and they were sending me to Hawaii to scuba dive with a team there that helps with adaptive scuba diving.
I didn’t expect the trip to be as amazing as it was, from the luxury accommodations at a resort in Honolulu to the amazing scuba diving experience itself. I would’ve been happy to just put on a mask and air tanks and go underwater and see some pretty things. But before I could even do that, the Trident Adventures team called to see if I wanted to jump out of a helicopter into the water first. Of course, I said, yes!
Steve, the owner of the adventure company in Honolulu, accompanied me the whole day. He got me outfitted and helped me into the water, and he coached me on how to breathe underwater. It took a while to get my ears adjusted, but once I did, we were underwater and in a whole new world! He never left my side, and guided me through the whole experience.
As someone who has lost most of the use of my arms, it was an added delight to be able to raise them underwater – they were almost weightless.
After about 10 minutes underwater, one of the team members brought over an octopus they had caught. They handed me the wonderful creature, and he began to wrap his tentacles around my arm. I held him and caressed him and played with him for 20 minutes. Couldn’t get enough of this amazing experience with this incredibly intelligent animal. It was one of the most surreal and beautiful moments of my life.
I can’t thank Team Gleason enough for this amazing experience! My partner Bevin will treasure these memories for the rest of her life.
California Zephyr Rail Experience
Tommy Culpepper
I was diagnosed with ALS in February of 2019.
After a month of feeling angry and then sad, I decided not to let my diagnosis stop me from completing my LIFE LIST.
Traveling on Amtrak across the country will now be checked off and we can’t thank Team Gleason enough for helping us to do that.
Our journey Begins in Chicago at the beautiful and historic Union Station. Enjoyed an amazing breakfast before boarding the train for San Francisco. All Aboard… We knew our ALS Adventure had begun. During our two days on the train we got to see the Great Plains, Rocky Mountains, and the open desert landscapes of Utah and Nevada.
I’m compelled to share a bit of the train experience itself. Just want others with mobility issues to make an informed decision. Especially if traveling long distances and over 8 hours or so. The ADA cabin is quite small. It was recommended for me to stay seated in my power chair throughout. I wasn’t able to stretch my limbs for 48 hours, which is the duration of this particular trip.
The cabin is in the back, and unfortunately, it’s where the public restrooms are for that car as well. Not ideal being in that airspace. Once we got to the town 30 mins away from San Francisco, we transferred to a motor coach to reach downtown. Unfortunately, they have a designated drop off for all passengers and it was roughly an hour away from the hotel.
Day three we finally reach San Francisco to relax and reminisce about our scenic journey. Day four we took time to explore all San Francisco has to offer. With an included hop-on, hop-off pass, our guided tour was phenomenal.
Amy was just Picasso with her iPhone camera. The GoPro never worked but she pivoted and got some beautiful pictures.
So much history. Some of the buildings predate the earthquake and subsequent fires of 1908. It was majestic seeing the sites. Fisherman’s Wharf and the various piers. The Golden Gate Park/Bridge, Alcatraz island, China Town, Union Square and Haight Ashbury. Stopped by the Jimi Hendrix red house.
Being a genre music connoisseur and vinyl collector, this makes my album purchases even more meaningful and worthwhile. “For a few years in the 1960s, Hendrix lived in the home at 1524 Haight Street, which is only a few doors down from the famous intersection that gave the neighborhood its name.”
We had the best time on this adventure but all things come to an end. This is an example of living my life in the best way and being the designer of said life. I feel alive, curious and confident that I won’t worry about yesterday or tomorrow. Times are tough but this vacation allowed us to get away from the stresses of our day to day.
Thank you, Team Gleason, for helping me to enjoy the present and all the newly created moments.
Sailing in Newport, Boston Museums, and Fenway Park
August 2022
Rachel Clifford
David Jan Campbell was diagnosed with ALS in March 2021. His family reached out to Team Gleason to help with his dream Adventure to Boston with a stop in Newport, RI to go sailing. Team Gleason was thrilled to help make this dream a reality.
My dad’s favorite part of the whole trip was without a doubt the Sailing in Newport.
He had a smile on his face the entire time.
The only sailing he has done was on lakes and rivers so this opportunity to sail on the ocean was unforgettable. All of his life he wanted to learn to sail and eventually when he retired he was able to buy a small sailboat.
He was able to use it for some time but in the long run was forced to sell it.
The most memorable part of the trip was the sheer amount of awe inspiring things we got to see. The Harvard Natural History museum had so many dinosaur skeletons that it was like going back to prehistoric times. At The New England Aquarium, we were able to take in so very many interesting species.
The Museum of Science was unlike any other experience because this whole place is like one giant interactive space that is just made to explore and think of life and our world in ways that you can’t imagine. A lot of this was geared towards children but it did not even matter that we were all adults. In a way we could appreciate it even more.
The day that we spent here was an amazing last day in Boston. It is so monumentally huge that I feel you could spend an entire week here and still not see all that they have to offer.
We definitely want to return one day.
What made it even better was getting to see artwork, paintings, and artifacts that are world famous.
It was extremely surreal to be within a foot of such amazing pieces, so close you could reach out and touch them…that’s not allowed so we didn’t.
This trip means so very much to all of us. Especially my dad.
He hadn’t seen his brother in over a decade because he lives on the west coast. Both my dad and his brother are retired and living off a very limited income and therefore it is virtually impossible for them to see each other at all.
I expect it will just get harder as time goes on and his condition progresses. It is also the first family trip we have ever taken that all of us kids were there with him so it was completely new and a super special time.
Actually, a lot of firsts happened on this trip.
Dad had never been to an MLB game before and we got to see the Braves beat the Red socks at Fenway Park and it was epic, we loved it! So many other firsts like Uber, Lyft, AirB&B, and many more.
This trip was also so insanely special for my Uncle Dale who got to fly home and join us on the trip. It just all wouldn’t have been possible without the gracious help of Team Gleason. We are all so very grateful that words can’t even begin to explain.
We did face some challenges.
The most significant one was probably the nail that found its way to my front tire. We first realized when we parked the car in Boston to go into Vose Galleries to see some paintings done by my father’s favorite painter Aldro Hibbard. Not wanting to miss these incredible works of art, we decided to go in and deal with the tire after.
I assumed it could be plugged really easily but every shop we asked wouldn’t do it so we ended up driving around with that nail the entire rest of the trip (not recommended). Somehow by driving on it the nail pushed in even further and was no longer leaking air at all!
We are all so extremely thankful for all of the help you have given us. It certainly wouldn’t have been possible without you so thank you from the bottom of my heart!
All I want to do now is pay it forward and hopefully be in the position to contribute in the future and help others have all these priceless memories.
Soaking Up the Sun and Memories
More than 10 years after her ALS diagnosis, Linda was able to have an action packed Florida with her family and amazing support team. Team Gleason was thrilled to support Linda as she spent a week in Orlando visiting the happiest place on earth, and another two weeks soaking up the sun on Marco Island.
“Before my diagnosis, I was an avid adventurer that enjoyed snorkeling, sailing the ocean and spending time with my family,” wrote Linda. “It’s been a long time since I have been able to share new experiences and quality time with my daughters.”
For the Orlando portion of the trip, Team Gleason was thrilled to rent a beach wheelchair for Linda. This chair is equipped with the necessary wheels and equipment to allow Linda to roll right onto the beach and see the water. Beach Wheelchairs can be an amazing resource for individuals with ALS. There are many different types, including ones that roll into the water like Linda Used, and motorized chairs that can take on the loose sand. While there are many rental companies across the coast, some cities and national parks offer free beach wheelchairs.
“My favorite part of the entire trip was being able to have one last vacation with my daughters. It was a gift from God and I would love to thank Team Gleason for that opportunity. I truly believe this trip saved my life. I had so much fun on this trip and got to go to the beach one last time in my life. I greatly appreciate everything Team Gleason did for me.”
Her daughter was also quick to let us know that it was great to be with her mom, “It was a trip of a lifetime. It was great to go to Florida with my Mom again. Something that I never thought was possible. Thank you so much Team Gleason!”
During her stay in Marco Island, Linda and her family take a boat tour through the nearby estuary with Rising Tide Explorers. The pontoon boat they sailed on, named Dino Days, was actually modified by Mike Donahue who also had ALS. Mike fully customized his boat to include large, comfortable seats, full length Bimini shade and wheelchair accessibility, which make this vessel the perfect way to enjoy a day in the estuary. After his passing, his family donated the boat to honor his legacy and to empower others living with disabilities to enjoy the water.
“My favorite part of the entire trip was being able to have one last vacation with my daughters. It was a gift from God and I would love to thank Team Gleason for that opportunity. I truly believe this trip saved my life. I had so much fun on this trip and got to go to the beach one last time in my life. I greatly appreciate everything Team Gleason did for me.”
Her daughter was also quick to let us know that it was great to be with her mom, “It was a trip of a lifetime. It was great to go to Florida with my Mom again. Something that I never thought was possible. Thank you so much Team Gleason!”
During her stay in Marco Island, Linda and her family take a boat tour through the nearby estuary with Rising Tide Explorers. The pontoon boat they sailed on, named Dino Days, was actually modified by Mike Donahue, who had ALS. Mike fully customized his boat to include large, comfortable seats, full length Bimini shade and wheelchair accessibility, which make this vessel the perfect way to enjoy a day in the estuary. After his passing, his family donated the boat to honor his legacy and to empower others living with disabilities to enjoy the water.
The trip was not without its challenges “At the first house, the bathroom chair would not fit in the bathroom,” explained Linda. “The bathroom chair also did not fit in the second house’s bathroom either, so I showered outside the whole time.”
Finding fully accessible hotel rooms and short-term vacation rentals can still be difficult despite ADA regulations. Making calls or checking online for information about door measurements, ramps, shower door entry width, and other accessibility features can help catch issues before they arise. It’s important to note that there are some great fully accessible short term rentals, but they can be difficult to find. While hotels do tend to be more accessible because of stricter regulations, it’s always a good idea to call ahead and double check.
“Despite being a resilient person, I have a lot of days where I doubt I can keep going like this…this opportunity has given me the strength to keep pushing past what seems like insurmountable odds,” wrote Linda.
“This trip has allowed me to experience some of the things that used to bring me joy before I became completely disabled.”
