Press

Macey’s Hawaii Adventure

December 2023
by Keith and Macey Hoaglund

After applying in July, Team Gleason was finally able to assist Macey in December for her dream trip to Hawaii! In her application, Macey wrote: “I am so excited to go to Hawaii. I’ve never been there because it seemed so out of reach. I want to do anything and everything there is to do.”

My daughter, Macey, was approved for a trip to Hawaii in December. She was thrilled to hear the trip included airfare and hotel accommodations for four! Macey, her care provider Charlie, her Aunt Brenda and I made up the crew. In addition, the flight was a non-stop direct flight from Minneapolis to Honolulu. This was a big deal as getting on and off a plane is kind of challenging, managing Macey’s chair and everything, but she had some great seats to help endure the long flight.

Upon arrival we were greeted by a very helpful representative who provided accessible transportation to our hotel.

The hotel was situated right on the beach and had amazing views of the ocean and surf. Macey or I had never been to Hawaii before it was simply amazing. We had easy access to the beach, restaurants, and shopping. The hotel was also close enough to downtown that we could walk. We spent one day at the local zoo where we saw elephants, giraffes and sloths. Not to mention all the wonderful vegetation and flowers everywhere.  

“I never imagined a vacation like this. When I was diagnosed, I just kind of assumed I would never be able to travel anymore, and I haven’t. Although I am progressed quite a bit, I have people around me who keep encouraging me and making travel possible. – Macey Hoaglund

This was truly a once in a lifetime experience and Macey and a big smile on her face the entire week. To top it all off, Macey was upgraded to first class for the return trip, these are the seats that lay flat so she was very comfortable for that 8-hour return flight.

Thank you, Team Gleason, for this amazing and memorable adventure. 

Adventure Details:

FLIGHT: Delta Airlines, Minneapolis/St.Paul, MN ⇔ Honolulu-Oahu, HI

LODGING: Honolulu-Oahu, HI (HNL) – Hilton Hawaiian Village, Resort View | Mobility Accessible, Roll-in Shower

What a Way to Make an Adventure – Tennessee and Dollywood

October 2023
by Tammy Rogerson

Team Gleason was happy to help Tammy and her family explore Pigeon Forge, Tennessee – a spot that holds sentimental memories. We covered lodging with an accessible VRBO and their trips to Dollywood and Ober Mountain in Gatlinburg. Read Tammy’s write up below to hear all about her Adventure!

Dollywood was my favorite part of the Adventure. I have always loved that placeAnd seeing my family enjoying it made me happy. This trip brought me enjoyment. Seeing my family having fun was enjoyment enough. It gave me a chance to spend quality time and fun time with my family.

I know I don’t have much time left and what time I do have I want to do things and spend what time I can with them.

I love Pigeon Forge for many reasons. I love Dolly Parton. I love that mountain air. Her park is beautiful with her songs playing. Riding the rides and getting soaked with Mylee, my granddaughter, and my son, Cameron were the most memorable parts. Getting into the ride was tough, but my son and the ride attendant helped me. 

My Dad had a log cabin in Tennessee, so I have been to Pigeon Forge before – most recently for my Honeymoon in May 2020. I would carry my two sons when they were children also, but I have not been able to take my granddaughter, Mylee. 

A Note from Tammy's Daughter-In-Law

Mrs. Tammy has spent all of her life working and caring for others,” wrote Sarah, her daughter-in-law, in their Adventure application. “So, when trips were brought up, she mentioned New York and Pigeon Forge. I asked her about Pigeon Forge, knowing it had sentimental value, and she said yes. This adventure means so much more than just a trip to our family. 

Tammy’s Advice:

This trip [Dollyworld and Ober Mountain] was very accessible for me; I was able to go anywhere I wanted with no trouble.

My advice to others is to be prepared to have fun. It is a lot to see. It is beautiful in Tennessee.

A trip worth taking! 

Northern Lights or Bust!

August – September 2023
by Joseph Redmond

“I flew from Baton Rouge to Chicago and stayed in the famous Palmer House in downtown Chicago. Then, I traveled by train from Chicago to Seattle. I boarded a coach from Seattle to Vancouver, B.C.” -Joe Redmond, interviewed by Nola.com

I will begin this by stating: an arrow can only be shot by pulling it backward. So when life is dragging you back with difficulties, it means that it’s going to launch you into something great. So, just focus, and keep aiming.

That’s what I did, and overall, my life is the better for it!

There have been A LOT of changes to my life since I was diagnosed. One of the POSITIVE changes was when I got connected to Team Gleason.

It had been on my “bucket-list,” for quite a while, to travel across the U.S. on a train in a “sleeper-car,” to take a glacier cruise to Alaska AND to see the “Northern Lights.”

Now, with their assistance, I’m doing ALL THREE in one trip!

I flew from Baton Rouge (LA) to Chicago (IL). Stayed in the famous Palmer House in downtown Chicago. Then, traveled by train across America from Chicago to Seattle (WA). Then, boarded a coach from Seattle to Vancouver, BC. I spent a full day exploring Vancouver via a “Hop-On/Hop-off” bus tour, although, there wasn’t any “hopping!” Then, I boarded a cruise ship to Alaska through Glacier Bay National Park on Norwegian Cruise Lines.

I re-boarded a train in Seward (AK) to Anchorage (AK) then continued to Denali National Park. I stayed IN the park and took the Tundra Wilderness Tour which included an amazing view of Denali from base to summit. From Denali, I continued via train to Fairbanks (AK). Two nights in Fairbanks allowed a spectacular chance to view The Northern Lights (Aurora Borealis).

I then flew back to Baton Rouge (LA) after a vacation of a lifetime!

Team Gleason even hooked me up with a powered travel-wheelchair. They also sent me a GoPro video camera. Bear in mind, I’ve NEVER owned/borrowed/had/used one before, so, I had a fear that most of the videos would be of my face and me saying, “Is this thing on? Is this thing recording?”

Time and health are two precious assets that we don’t recognize and appreciate until they have been depleted.

So, while I have the health do it, and with Team Gleason’s assistance, and with No White Flags, I set off!  But, happiness doesn’t look perfect. It looks a bit disheveled – a little wild – out of sorts in all the right ways. So, if your goal is a happy life – don’t plan on “perfect.” The good stuff happens when you are willing to make a mess!

So, WHATEVER this trip brings will make me happy! I will CHOOSE to find the JOY in the journey before me!

So, I’ve heard it said, “A TOURIST wants to ESCAPE life, a TRAVELER wants to EXPERIENCE it.”

You never know how long life is gonna be, so, why waste it on an escape? Spend it on experiencing it, instead!

People talk about “knowing their limitations.” Well, stop limiting yourself! That’s what I’m doing on this trip.  When you open yourself up to new possibilities, you’d be surprised where life can take you. In MY case, all the way to Alaska, eventually!

NOTHING in nature lives for itself, rivers don’t drink their own water, trees don’t eat their own fruit, flowers don’t spread their fragrance for themselves. SEE? Living for others is the rule of nature! So, GIVE of yourself!

A simple smile can make someone’s day, a hug may give them the connection with others they’ve been longing for, refill someone’s cup of happiness!  You’ve seen my smile, right?  Well, I can’t do MUCH, but, I CAN smile and enjoy and be enthralled, and all this was made a reality for me by Team Gleason!  So, THANK YOU TEAM GLEASON, you put a smile on my face!

I like to laugh even MORE, I love to bring others humor!  Yes, this adventure is magical, but, my day-to-day pleasure is to bring others happiness!  At the end of the day, I want to be the reason you look down at your phone and smile, then walk into a pole!

If you’re one who brings humor and joy and happiness into MY life…thank you! I truly appreciate and love you!

I’ve learned that the secret to moving forward in life is really not a secret!  Focus your energy not on fixing and fighting the old, but on building and growing something new.  Reset and step forward. There is nothing about your present circumstances that prevent you from making progress. ONE. TINY. STEP. AT. A. TIME.

Look at me! I’m taking my adventure at 60! (and I have ALS!) C’mon! LIVE!

For some people, their glass is half-empty. For others, THEIR glass is half-full. Remember, that either way, IT’S REFILLABLE! I’m just thankful I HAVE a cup!  Fill your glass EVERYDAY with experiences and people that bring you joy! And YOU be joy to others!

I may feel miserable, at times, but, that’s no reason to make those AROUND ME feel miserable. Or chances are they won’t be around me for long! Instead, emit joy! We all get a choice – choose happiness! It’s all perspective. LOOK FOR the silver-lining in every situation!

Don’t start your day with the broken pieces of yesterday. Every day is a fresh start. Each day is a new beginning. Every morning we wake up is the first day of our new life.

A secret to happiness is letting every situation be what it is instead of what you think it should be.  That said…”it is what it is.” Life will happen whether we’re ready or not. Our “mission” is to adapt and adjust to it…regardless of what “it” is.  Then, CHOOSE to be happy about it! (Yes, it’s an ongoing theme for me! “Choose happy!” It’s how I survive each day.)

I am so happy I don’t have a fake image to maintain. What you see is what you get.

Some days I feel I’m amazing, other days I’m a wreck and leave my house keys in my freezer, but everyday I’m ME.  I never pretend to be something I am not, well, sane. Sometimes I pretend to be SANE!

I don’t like being the center of attention. I prefer to shine the spotlight on others. I am genuinely a happy person, so, I don’t take any offense at my insignificance to others! An observation: the hardest arithmetic to master is that which enables us to count our blessings. (Thankfully, I can do THAT math and it’s a VERY LARGE number! And it grows larger EVERY DAY!)

Well, my ORIGINAL plan to view The Northern Lights was just to wait until dark…and look up! THAT didn’t work so well. I even had LOTS of caffeine to stay awake and go out at all hours. I FINALLY gave up and went to bed about 3am.

Oh! We went to a lodge out in the middle of nowhere in the Alaska wilderness outside of Fairbanks for the Aurora Borealis Viewing. The owner’s partner died of ALS! We had a long and involved talk about the dis-ease, Steve Gleason, feeding-tubes, tracheostomies, “The Ice Bucket Challenge,” etc.! Small world, huh?

I have enjoyed my solo journey. IMMENSELY!. HOWEVER, I cannot express strongly enough that you should have a travel companion!

There have been a number of times that I wanted to turn to someone and comment on a sight. A moment SHARED is indeed a much richer experience! So, travel with a Spouse, a Significant-other, a Family-member, a Friend, a Caregiver. SOMEONE! ANYONE! with whom to share the moment!

I’M HOME! THANK YOU, TEAM GLEASON! We’ve come full-circle.  On my trip, I saw Snow-capped Mountains, Whales, Glaciers, Dall Sheep (ewes AND rams), a Momma Grizzly Bear and her cubs, and more. Some pictures, some videos, some neither…just enjoyed SEEING them!  No matter what life brings, next, I will ALWAYS have the memories of the train rides and the cruise and the spectacular landscapes!

Were there difficulties?  Some, but, they were very minor compared to splendor I saw!  Because of the movement, I didn’t attempt walking between cars on the train. When it rained on the cruise, I didn’t take the shore visit and excursions, for fear of slipping and falling. Not EVERY room was an A.D.A. compliant room. I brought MY OWN (suction-cup) Grab-bar handles, and I had a bungee-cord on my walker to control my suitcase.

Would I do it, again?  IN A HEARTBEAT!  I’m ready for my next adventure! And STILL NO WHITE FLAGS!

49ers Go Above and Beyond for Lifelong Fan

October 2023
by Ammon Freestone

Despite living in Kansas City, Ammon has been a lifelong 49ers fan.

After spending the 90’s watching the Cowboys beat his favorite team over and over, he wanted to see the tables turned.

The 49ers did not disappoint, even before the first player took to the field. 

Ammon’s sister reached out to Team Gleason and to the 49ers to make his Adventure happen.

Team Gleason was able to get him to San Francisco, and then the 49ers crushed it. They provided two tickets to the game, field access, and even had someone waiting with a wheelchair to help Ammon cover the long walks easier.

“My favorite part of the Adventure was seeing my favorite team beat their conference rival,” said Ammon, “The most memorable moment was watching the game with my wife. Mobility was a challenge; my wife was able to help me overcome this challenge.” 

The 49ers went above and beyond, meeting Ammon and his wife at the parking lot with a wheelchair to help tackle the long distances that anyone must deal with when going to an NFL stadium. 

“This trip gave me a memory I’ll have for the rest of my life. I’m very grateful. Accessibility was good,” wrote Ammon. ”I’d tell a person doing a similar adventure to do the adventure sooner rather than later.” 

 

Team Gleason would like to extend a special thanks to the 49ers for hosting such an accessible experience for Ammon.

A Trip to See Mom

November 2023
by Jessica Cavin

Team Gleason helped Karen fly down to Texas to visit her mother! Her daughter, Jessica, shared a few words about their trip below. Special thanks for ALS Ride for Life for their help with the van rental!

I just wanted to say thank you for helping us with my mom’s adventure.. memories were made. There were lots of laughs, and even some tears. We got to see family, got to visit the gravesite of my grandparents, and even did some shopping.

This was only made possible because of Team Gleason. We cannot thank you enough and will be forever Grateful for what y’all done for my mom and us.. and a big shout out to Emily (Team Gleason Adventure Coordinator) for all the hard work that she put into planning this trip and making sure everything was perfect.. she’s awesome!!

Thank you thank you thank you from the bottom of our hearts ❤️❤️

Karen in her Quantum Power Wheelchair

Four generations in one photo!

Lots of love

…and even some tears!

Destination: Miami Wedding with a Pit Stop in Space

November 2023 by Irene McKeaney

Oh Em Gee! What a great trip! There is no way to thank Team Gleason enough.

Absolutely no issues with the travel arrangements at all. American Airlines was amazing! Each and every flight crew member was so helpful and respectful. 

The wedding was just beautiful! The family time was great. Sunday, we headed to the beach on Key Biscayne. Nelson, his brother-in-law, nephew and the groom carried me in the wheelchair onto the beach! The bride called me Cleopatra, LOL. 

Monday, we headed to my sisters. It started raining on the ride up and never stopped until we got to the airport to go home. The rain didn’t stop us though. Tuesday, we went to Disney Springs for some shopping and food. Wednesday, we went to Ocala for dinner with my niece and her bestie/teammate. Their game was canceled because of the rain but we had a great time at dinner. Thursday was Kennedy Space Center. Holy moly, that was awesome! It was Nelson’s favorite thing on the trip lol. Friday, we flew home.  
Once again, we can’t thank all of you enough for this wonderful adventure!
Team Gleason was happy to help Irene and her husband attend her niece’s wedding in Miami. She was able to take the direct train, Go Brightline, from Miami to Orlando to spend even more time with her family. 

Witt Wolfpack Whitewater Rafting Adventure

November 2023
by Todd and Betsy Witt

This whitewater rafting adventure started last winter when we received a phone call from our niece, Callie, who lives in Aspen, Colorado and works for a non-profit called Challenge Aspen. Challenge Aspen is an amazing organization that is dedicated to impacting lives through year-round adaptive experiences for individuals with cognitive and/or physical disabilities.

Callie told us that Challenge Aspen (CA) and her team often works with people who have ALS, just like Todd, and has specifically worked with Team Gleason in making these experiences happen. Callie suggested that Todd should apply for a Team Gleason Adventure and she would help coordinate it through Challenge Aspen. We had heard about Team Gleason but had no idea they provided this type of experience so we jumped at the idea. Todd LOVES the outdoors, we had never been to Aspen, and to have our immediate family involved with the experience? It seemed like a win-win all the way around.

The application process for an Adventure with Team Gleason was incredibly easy and they were very responsive, supportive and generous with Todd’s dream.

One thing Todd has always wanted to do was to go whitewater rafting and through Team Gleason and Challenge Aspen, this was entirely possible. Team Gleason helped us by providing air fare, lodging and our activity at no charge to our family.

We were able to include our daughter, Megan, who is attending college in Montana, and even Callie’s family from Wisconsin joined us for the fun. Talk about a Wolfpack full of love and who were ready for adventure! (Our ALS walk team name is the Witt Wolfpack)

It was literally the week of a lifetime. Our family all arrived in Aspen on the same day at various times and from various locations (Montana, Wisconsin, California) and we were able to stay in one big house together. The weather was absolutely beautiful and the mountains and surrounding towns were stunning. It was so relaxing just to be away from the day to day routine.

We have been traveling every month this past year to the Mayo Clinic in Minnesota for a stem cell trial for Todd so to be on a trip that didn’t involve doctors and procedures was literally the best thing ever. We felt almost “normal” which is something you really don’t feel anymore when you are living with ALS.

The day of the whitewater rafting adventure was picture perfect. It had rained the night before so the Colorado River was moving faster than usual but that just made the rafting more exciting. Challenge Aspen coordinated with Sage Outdoors for the rafting trip. Our guide, Grant, is an incredibly skilled, knowledgeable and super friendly, upbeat raft guide. Grant and Callie have both worked with people with disabilities and neurodegenerative diseases like Todd so we knew we were in good hands with them.

After some instruction on land, and helmets and life jackets on, our Wolfpack was ready to hit the river. Todd was securely placed in the middle of our raft with the rest of our family surrounding him and Grant right behind him. And off we went! Our family handled the class three rapids like pros – it was absolutely exhilarating and the thrill of a lifetime! The first half of the river had about 6 rapids and then the rest of the trip was smooth sailing. We could sit back, relax and take in the gorgeous canyon scenery – and even hop in the water for a swim. Our time on the water lasted about 3 hours but it felt like it was over in a flash.

 

Truly a huge adrenaline rush for everyone but especially for Todd – his smile and hoops and hollers said it all. For that brief moment in time, we all forgot about ALS and lived life to the fullest. It is a day that will live in our hearts forever. 

Even now, we are still buzzing from all the goodness that came out of that day. We met and made amazing new friends, we were able to spread ALS awareness with others, and we made amazing memories and all became closer as a family from our rafting trip together.

Most importantly, Todd felt so proud he was able to successfully do this adventure. He always tells everyone he is “living the dream” and that day he truly was. The memories Team Gleason gave our family are irreplaceable and something we will cherish forever. Thank you, Team Gleason, from the bottom of our hearts. 

Team Gleason would like the extend a special thank you to Challenge Aspen for their support on this Adventure.

Adventure to John-Boy’s Place

By Kasey Roszell
September 2023
After a few delays and tries, Team Gleason was able to help Robert go to John-Boy’s Place in Andalusia, Alabama with his family for his Adventure. ALS Ride for Life generously assisted with the cost of their rental van for the 17 hour trip from Michigan to Alabama.
Our favorite part of the Team Gleason adventure was being able to spend time traveling with our toddler, and show him the love for traveling that we had before ALS. We were able to relax together, and Robert was able to watch Henry touch the ocean for the first time. It meant so much to us to share these firsts as a family, knowing that Robert was able to see these milestones for Henry was absolutely amazing.

The most memorable part of our adventure was definitely the beautiful house that we stayed in and the view that it had. John-Boys place looks over a small pond, and has so many beautiful hummingbird feeders that bring hummingbirds to the porch all day! It was such a beautiful place for our family to spend time relaxing in, and we were able to relax knowing that everything Robert could have needed for accessibility was right there.

Robert had not taken any trip in the car over an hour, for almost 5 years, it was a huge hurdle for us as the trip date approached. Luckily Team Gleason and Ride for Life were able to get us a wheelchair van that had the space Robert needed to be comfortable, and he was able to stay in the van the entire 17 hour drive with minimal discomfort! 

This trip meant more than I can even start to describe. We had dreams of traveling before Robert’s diagnosis, and those dreams were shattered after he endured back surgery, and then an ALS diagnosis at just 23 years old. We weren’t able to show our son that part of our lives beforehand, since we weren’t able to find a way to make Robert comfortable or places that could stay that could accommodate his chair/hoyer lift.

Staying at John-Boys Place was such a breath of fresh air knowing that Leslie had thought of anything and everything that we could have needed while we were there and was able to help with any questions! We were able to share this trip with close friends and family and it was nice to be able to share that space with the people that we love!

Absolutely next level accessibility, John-Boys Place was the definition of accessibility for an ALS patient.

There was a wheelchair lift to get Robert to the front door, wide doorways for him to explore the home, huge shower with shower chair, paved path to the pond, and so much more.

It was wonderful to know that everything had been thought of in terms of Roberts’ wheelchair being able to move around the property.

Adventure Details:

What advice would you have for someone planning a similar trip?
Enjoy yourselves! I had so much anxiety leading up to this trip, since it was the first time Robert had been in his chair or a vehicle for an extended amount of time, and it all went so smoothly. Traveling with an ALS patient can be difficult, but adding a two year old to the mix definitely made things more interesting!

We were able to drive our rental wheelchair van the entire way (Michigan-Alabama) with minimal stops, because the van made the drive so comfortable for Robert. We were able to make some extra stops during the week that were unexpected because we thought Robert would be more worn out from the trip than he was, so it was a wonderful surprise when he also wanted to explore nearby attractions! Everything absolutely went better than I could have ever expected. It was such a magical time to spend together as a family!

 

An Unforgettable Adventure | Key West

October 2023
by Charity Good

Our family had an amazing trip to Key West! 

It was both of our boys’ first time flying and there were definitely some jitters at first, but then once we were in the air excitement replaced anxiety. Roughly two hours into our flight we started to see beautiful blue coastal water and shoreline and our anticipation grew. We left Virginia with chilly temps and rainy weather and we were transported to a coastal paradise with bright sunshine, blue skies, green palm trees, and a heat advisory! Temperatures remained in the upper eighties or nineties the entire trip and we so enjoyed the sunshine!

When we arrived we found our accommodations for the next week at The Laureate.

The lodging was fantastic for Brian and we felt at home! There was a nice room with lots of space for a wheelchair. The shower was not roll in as we anticipated but Brian still has the ability to step into the shower to his seat so we improvised. Our balcony was large and we had a beautiful view of the ocean, palm trees, and pool area.

We enjoyed evenings lounging by the pool which was beautiful and would light up purple at night!  The staff were very accommodating and would bring needed supplies to our room.

We were anticipating the accessible lift to the pool to be working but the battery pack was on order so unfortunately Brian could not use the pool. 

The next week was full of beautiful ocean scenery which started at Fort Zachary Taylor. They had beach wheelchairs for use for no charge. We were able to take Brian onto the beach to see the beautiful clear ocean. He walked into the ocean a few steps and was able to get his feet in the sand and water with the assistance of his oldest son, Audyn and his sister, Amber. The boys enjoyed playing in the ocean. There is also a wonderful little tiki concession located at Fort Zachary Taylor with tropical drinks, snacks, and restrooms and this was a refreshing way to cool down with the hot temperatures. 

We also had some of the best food while in Key West. The best experience we had was at the Seaside Cafe at The Mansion. The ride in a wheelchair was a bit bumpy but the view was spectacular! Outdoor dining with clear ocean as far as the eye could see. We enjoyed lobster biscuits and lobster pizza and watched the waves cascade onto the shore.

Our table sat in sand and there was a perfect concrete area for Brian’s wheelchair to sit at the head of the table. It was hard to top that dining experience. We also enjoyed Sloppy Joe’s drinks and conch fritters, which is a must experience located on Duvall street. We had great service and accessibility at both locations!

We visited Duvall street many times throughout our trip and there were so many interesting shops, restaurants, music, and attractions! We took a ghost tour which was on a trolley and  wheelchair accessible which was fantastic and appropriate since we visited a few weeks prior to Halloween. It was a great way to learn about the history and important figures/history in Key West. We had looked forward to a ride on the Conch Train but with all the excitement and plans, we ran out of time but we were happy to know it is wheelchair accessible as well!

Overall, this was one of our favorite family trips and one of the best places we have ever visited. Everyone was friendly and so accommodating and we enjoyed our time in Key West! We are so grateful to Team Gleason for this wonderful experience. We could never thank you enough for all of the priceless memories we made as a family!

Brian had a fantastic time and we were surprised at all of the fun he could participate in! It was an unforgettable trip!

Adventure Details:

TRAVEL

  • Flights: American Airlines
  • Hotel: The Laureate Key West

HIGHLIGHTS

  • Fort Zachary Taylor
  • Seaside Cafe at The Mansion
  • Sloppy Joe’s

Travel Tip: Make sure to contact the hotel to make sure they have the type of shower chair you need. Some do not have backs and some do not have arms. If you do not need head or neck support, you can usually buy a cheap version that fits your needs online for under $50 and have it shipped directly to the hotel. Many can be used for showers and toileting.

Remember, they only have to last as long as your trip. They should be sturdy but they don’t have to be perfect or expensive. The Laureate had just purchased new chairs with backs, but they did not have arms so we were able to ship one down for the Good’s.

Return to Hawaii | Team Gleason Adventure

July 2023
by Nadia Sais

Nadia’s connection to Hawaii started more than a decade ago. It’s where she met her husband. It’s where her first child was born. And visiting was on the top of her list when her family reached out to Team Gleason Adventures near the end of 2022.

“Prior to being sick,” wrote Nadia in her application, “hiking, exploring, caves, waterfalls, the outdoors in general was my life. It’s what we did every weekend. I’ve been sick now for three to maybe five years and our adventures have been dwindling. I just want more adventure with my family.”

It may have taken a while, but Team Gleason was able to send Nadia, her husband, and two children to Honolulu.

Nadia served in the U.S. Navy until she was medically retired after her ALS diagnosis. Her husband, who is still serving in the military, and his father, reached out to Team Gleason to help Nadia get back to Hawaii. 

To make it even more of an adventure, we were able to send them to the Kualoa Ranch Oahu where Jurassic World was filmed. They piled into ATVs to explore with a private guide.

The ranch where we had the tour was fully handicapped accessible and we had an absolute blast,” said Nadia. “The tour guides were by far the sweetest people I’ve ever met and really good at their jobs.”

It may have taken a while, but Team Gleason was able to send Nadia, her husband, and two children to Honolulu. Nadia served in the U.S. Navy until she was medically retired after her ALS diagnosis. Her husband, who is still serving in the military, and his father, reached out to Team Gleason to help Nadia get back to Hawaii. 

To make it even more of an adventure, we were able to send them to the Kualoa Ranch Oahu where Jurassic World was filmed. They piled into ATVs to explore with a private guide.

The ranch where we had the tour was fully handicapped accessible and we had an absolute blast,” said Nadia. “The tour guides were by far the sweetest people I’ve ever met and really good at their jobs.”

Traveling with ALS can have its challenges. Nadia explained:

“I learned the hard way in Waikiki that getting in the water was easy but getting out was almost impossible, getting out took me about 20-30 minutes and a lot of assistance from my husband and children, lol. If we went to Waikiki, I would rent a chair and umbrella either for an hour or for the day since I cannot sit in the sand without having difficulty getting up. I avoided getting in any and all beaches that had waves because every beach we went to was not handicap accessible nor did they have beach wheelchairs available. The only place we went to that had beach wheelchairs available was Hanauma Bay. We got there first thing in the morning. However, they only have three beach wheelchairs available and they were already rented out.” Even facing those challenges, when asked what her favorite part of her adventure was, Nadia said it was “Seeing my kids enjoy every second of our trip. Beach hopping and watching the kids enjoy every wave.”

Nadia and her family stayed at Hilton Garden Inn Waikiki Beach. While the view was gorgeous from their room, they did face some challenges.

“The hotel was really beautiful, however the room wasn’t as accessible as it should have been. The room was extremely tiny and if I was fully wheelchair bound it would have been extremely difficult to maneuver around the room. The shower was a large walk-in. However, if you stood in the shower it was extremely slippery. The view from my room was beautiful. We were about two blocks from the beach so the view we had was gorgeous. The hotel itself was handicap accessible on the backside. The front of the hotel only had stairs but inside the store that was connected to the hotel  on the other side there were stairs and an elevator lift. There is also a pool at the hotel. Stairs are the only way you can get in the pool but it is a nice pool with a cute waterfall which the kids loved. There is also a bar there and a pool table and lots of lounge chairs.”

Nadia’s Travel Advice:

“We would recommend getting a beachfront hotel because they have access to free lounge chairs and it’s just easier if they’re wheelchair bound. We would also just want them to know that a lot of beaches don’t have beach wheelchairs available so getting in the water to be able to swim in certain locations most likely won’t happen.”

Adventure Details:

FLIGHT: Alaska Air, Minneapolis to Seattle, Seattle to Honolulu

LODGING: Hilton Garden Inn Waikiki Beach

RIDE ALONG ATV RAPTOR TOUR: Kualoa Ranch

2nd Annual Valerie Kiper Golf Tournament

The 2nd Annual Valerie Kiper Golf Tournament was held on Monday October 9th at La Paloma Course at Tascosa Golf Club in Amarillo, TX. This annual golf tournament is held in honor of Dr. Valerie Kiper, who was diagnosed with ALS in December 2020. She currently serves as the Regional Dean of Texas Tech School of Nursing.  

Valerie has received the service of Voice and Message Banking through Team Gleason, allowing a synthetic version of her voice to be created using recordings. Valerie is an accomplished nurse with more than four decades in the profession and now teaches the next generation. She has been named a Top 25 Nurse and now spearheads the initiative. Well loved by the community, she was honored with the Dr. Valerie Kiper Leadership Scholarship named after her. 

The second year of this event was a major success as Valerie was surrounded by family, friends, and community members for a beautiful day of golf. More than 150 golfers made up over 38 teams for the sold-out tournament. In true Texas fashion, a Poker Chip draw was held and raised $5000! Another raffle, Swing for the Bling, included amazing prizes donated by Barnes Jewelry.

The walkway to hole one was lined on both sides with the names of people living with ALS; some in memory and others in honor of.

All event proceeds will benefit Team Gleason Foundation to improve life for people living with ALS by delivering innovative technology and equipment, as well as providing and empowering an improved life experience. 

Overall, the 2nd Annual Valerie Kiper Golf Tournament raised over $69,000! Special thanks to all of our sponsors for making this event such a success.

Winning Teams:  

Flight 1 

  • 1st Place – Amarillo National Bank 
  • 2nd Place – King Country Trailers 
  • 3rd Place – Junk Monkey 

Flight 2 

  • 1st Place – Estacar 
  • 2nd Place – Richard Constancio 
  • 3rd Place – Craig Neiman Team 

Longest Drive 

  • Men – Marcus Stockton
  • Ladies – Ronna Hopson

 

  • Closest to the Pin – Trevor Williams

Don’t forget to save the date for the 3rd Annual Valerie Kiper Golf Tournament – October 14th, 2024! More details to come.

Enjoy the Music

August 2023
by Jennifer Belk and Eric Opelt

Eric and Jennifer were planning an epic 9 state road trip adventure with Team Gleason to the west coast when Eric’s ALS symptoms started to rapidly progress.

A long road trip was out of reach, but Jennifer was determined to get Eric on the road. Modest Mouse and the Pixies were playing in Chicago and Jennifer was going to make it happen.

Last minute issues pushed an easy two day drive into a one day-long haul, but they made it. Team Gleason played a small role in this mighty adventure, but we are grateful we could help.

Here’s Jennifer’s story:

Seeing Eric enjoy the music as much as he did was a pure delight and watching the people around him make friends with him. It was our very last hoorah together. 

Prior to the show, Eric and I took a stroll on the riverwalk and it was amazing. The views, the weather, the atmosphere, it was a wonderful experience.

Hotels are always a challenge, accessibility does not mean the same thing to a hotel owner as it does for a wife trying to navigate her husband’s wheelchair through narrow heavy doors while loaded down like a pack mule.  

Eric wanted to see these bands from his youth once before he dies and we made that happen. The joy on his face the whole night was priceless. Chicago accessibility was great in that they had accessible transportation to and from the venue that were easily scheduled and accessed. The driver even taught me some things about Eric’s chair that I didn’t know.

Don’t wait, just do it.  Plan it and go.  Put on your patient pants and know that there will be obstacles to overcome but don’t allow them to stop you.  We almost didn’t make it because the path is not easy, travel is hard on both of us but in the end the trip was worth the work.