Skip to content
May 2, 2017 / tgexp

Mance Family European Adventure 2017

Thanks to funds donated to The Gleason Initiative Foundation, Team Gleason was able to send pALS Sam Mance, wife Sera, and daughters Cora and Julia on a European Adventure they will never forget.

IMG_0441

After ALS diagnosis, life for anyone close to pALS is anything but easy. pALS Sam Mance wanted to share his lifelong dream of seeing Europe and especially the Duomo Steps with his family.

The Mance Family hopped on a flight in Newark, NJ and began their Adventure to Europe. Sam, Sera, Julia, and Cora’s first stop was London, England. Not letting the jet lag hold them back, they took to the streets at once. Opting for a “hop on/hop off” double decker tour bus and Thames cruise, the family was able to sit back and enjoy listening to the tour guides. The family saw everything from the Tower Bridge to the Tower of London, experienced the London Eye, which is a large Ferris wheel along the River Thames, and toured Buckingham Palace.

The next stop was Rome. After a flight delay and getting in late, the family awoke and made way to the Colosseum and various other historic sites which were in walking distance. The family enjoyed gelato, the Trevi Fountain, and finished up Rome with a tour at the Pantheon and the Vatican.

Taking a high speed train, the family made way to Florence, Italy in a little over an hour. Sam, Sera, Cora and Julia experienced local Tuscan foods such as rice balls and were able to see historic sights such as the Ponte Vecchio. The next morning they awoke to fulfill Sam’s lifelong dream – climb the Duomo Steps. Writing a research paper in college about the Duomo as well as being a carpenter for 20 years is what sparked the interest of seeing and climbing all 463 steps. Sam recounts “It was by far the most memorable part of the trip and understandably the most challenging”.

The next stop was Venice; the family arrived and quickly located a water taxi which whisked them away to their rental. Sam made sure to inform us “Word of caution – Venice is maze like in design”. Having one night in Venice and the toll of traveling, the Mances decided to stay in and make dinner as a family. The next morning they made their way to Milan, Italy and then Lausanne, Switzerland through the Alps.

The Mance Family enjoyed the train ride from Lausanne to Paris which provided some down time where they were able to recharge a bit. The Mances told us Paris is very beautiful during the springtime and the Parisians were both friendly and accommodating. Overall, a great experience.

Recounting the entire trip, Sam told Team Gleason “The Adventure has changed my outlook of living with ALS and for the better. The Reason being is that from the outset I was worried that I might not be able to keep up with out schedule but the opposite was the case… We had the Adventure of a lifetime, we made wonderful memories and ALS was a part of it but it didn’t slow us down. Thank you Team Gleason for making it happen!”

This slideshow requires JavaScript.

April 21, 2017 / tgexp

Yu Adventure

Thanks to funds donated to The Gleason Initiative Foundation, Team Gleason was able to bring pALS Oscar Yu the Adventure of a lifetime.  
170218_W_Hsuang (783 of 913)

Some of Oscar Yu’s passions include: family, friends, and live music from the 50’s and 60’s eras. When the Yu’s reached out to Team Gleason in hopes of an Adventure, the perfect combination of the three was devised. After deliberation over the Adventure type, Team Gleason chose to do what is not normally done; send the Adventure to the Yu’s.

Oscar Yu was diagnosed with ALS in December 2015. A family man centered around spending time with loved ones, the most appropriate Adventure was bringing a live oldies band to the Yu’s to share with friends and family. In his Adventure recap, Oscar stated “Team Gleason contributed to my one big passion – live oldies music… I was able to enjoy live oldies music for hours”.

He continued to say “My best friends were signaling to the dance floor and I shook my head no and smiled. They insisted and rolled to to the dance floor while the song “Pretty Woman” was playing. My caregiver was moving my chair on the dance floor along with my wife, family, and best friends surrounding me. Suddenly, EVERYONE came on the dance floor and started dancing”. That moment Oscar shared with his friends and family was one he will always remember – smiles, tears, and “so much love all around”.

“It’s been a month since [the Adventure] and I am still smiling when I think about it. I’m so thankful for that day, the band, the memories… I am grateful to have the Adventure of a lifetime with a live band AND be the sole reason for everyone getting on that dance floor… There have been lots of good things that have happened since getting diagnosed, and I am very blessed to have people reach out with love – like Team Gleason has done”.

This slideshow requires JavaScript.

March 10, 2017 / tgexp

Super Bowl LI Adventure


Gravolet5Thanks to funds donated to The Gleason Initiative Foundation, Team Gleason was able to send pALS Robbie Gravolet, wife Rhonda, and Father-in-Law Ed on an eventful extended weekend in Houston, TX!

The Gravolet’s spent a whirl-wind weekend in Houston, Texas where they were able to enjoy and escape their daily routines. Robbie was diagnosed with a slow progressing form of ALS two years ago so this Adventure was just what he and his wife needed!

The weekend started off with, what Rhonda described as “the BEST NASA TOUR EVER”. Robbie and Rhonda both work for NASA Michoud in New Orleans and were able to pull some strings to get a special VIP tour of NASA’s Johnson Space Center. Steve Gleason and some of his Team accompanied Robbie, Rhonda, and Ed on the amazing tour led by Austronauts Ellen Ochoa, Jeff Williams, and (the Gravolet’s “FAVORITE”) Jeanette Epps. They were able to tour the inside of Mission Control – which seldom to never happens!

Saturday night the Gravolet’s joined Team Gleason in attending a Super Bowl Pre-Party where they had photo opportunities with Michael Phelps (all time records for Olympic gold medals) and Friends’ actor David Schwimmer. The weekend concluded with field passes and tickets to Super Bowl LI. They had a “GREAT TIME” and had a NFL VIP tour of NRG Stadium.

“I cannot express what this trip meant to us.  The memories will forever be sketched in our minds.” – The Gravolet’s

This slideshow requires JavaScript.

February 23, 2017 / tgexp

Pepper Family Adventure

With the funds donated to The Gleason Initiative Foundation, Team Gleason was able to pay for pALS – Kole Pepper, his wife Jessica, and their two children on a trip to California on a truly memorable vacation.

  “It was a true blessing to be able to stand back and watch, as some of his dreams came true.” – Jessica Pepper 

     The Pepper Family was able to travel from Seattle to Los Angeles for a 5 day, 4 night adventure the whole family could experience together.

One of the first highlights of the trip for the family, was that they were able to go to Disneyland together and even ride several rides as a family, which they have never been able to do before.  The two girls, 11 & 8…were thrilled with getting to meet all the characters, seeing numerous parades and just getting to experience the magic of it all, with both parents by their side and able to participate as well.

Kole has been a life-long Miami Dolphins fan…especially his hero, Dan Marino.  The trip was originally planned around attending a Dolphins game vs. the Los Angeles Rams. Jessica said, “When I asked Kole to make a bucket list, this is the only thing he wanted to do that I couldn’t ever complete for him.  Of everything on this list, this was the only thing that I didn’t know how to do for him. Team Gleason made that happen!!   

  Both the Dolphins and the Rams organizations were BEYOND helpful in accommodating the Pepper Family.  The highlight for Kole…was finally getting to meet his idol, Dan Marino.  Kole was brought to tears.  Mr. Marino took pictures with Kole and the family, signed autographs and really took time to spend with Kole.  This moment, was by far the most memorable part of the trip. “The girls saw their Dad get something he never thought he could.  That memory is etched in our minds forever.  Mr. Marino was so humble and so kind to my husband.  He really seemed to want to talk to him, he seemed genuine and real.   It was a true blessing to be able to stand back and watch, as some of his dreams came true”, his wife Jessica, explained.

This slideshow requires JavaScript.

While traveling is difficult and the go, go, go of the trip wore all of them down, they returned home in what was explained as a “State of Bliss”.

  “Thank you to those that made this possible.  To the Gleasons and everyone that works so hard at this organization, who worked endlessly to make sure this dream of ours came through for us.  My husband and children now believe that dreams do come true.”

 

November 9, 2016 / tgexp

Derrick Hatcher, Alaskan Cruise 2016

Thanks to funds donated to The Gleason Initiative Foundation, Team Gleason was able to send Derrick Hatcher, his wife Beth, and their daughter on an Alaskan Cruise to enjoy the sights, great food, and memorable time with family! 

Beth Hatcher wrote to tell us “We had an amazing time! Derrick was moved to tears. And traveling with someone with ALS takes an army, but can be done!!! While traveling with Derrick was very difficult, we were very prepared and accomplished everything smoothly. I’m so glad we got to take this trip as a family.”

The first few days on their Adventure, the Hatcher Family was able to see Seattle, WA, the Dawes Glacier in Endicott Arm Fjord, numerous “breathtaking views” on the White Pass and Yukon Route Railroad in British Columbia, and have a King Crab meal in Skagway. Derrick and Beth took the Mount Roberts Tramway to see a live rescued Bald Eagle display and some panoramic views of the Gastineau Channel and the city itself.

The favorite excursion however happened in Ketchikan, AK. “We took a ride on the Aleutian Ballad, a Bering Sea crab fishing boat.  The crew was fantastic and took great care of us.  The let us up to see things first, so Derrick wouldn’t be blocked by others.  And they let us stay behind after everyone had gotten off the boat and took pictures with us and gave us a little extra attention.  Derrick was very moved.”

Rounding up the trip Derrick and his family stopped in Victoria, B.C.  They enjoyed some delicious fish and chips at the Bard & Banker Public House as well as listen to live music “which [Derrick and Beth] haven’t gotten to do in ages. We both love music very much and often attended concerts”.  From Victoria the Hatchers returned home in Tennessee at about 1:30 a.m. from Seattle. A very long day for Derrick.

The Hatchers told Team Gleason “We had a fabulous time and are so grateful for the experience!! I am so grateful for the memories, just thinking about the trip makes me a little emotional. Thank you so much!”

June 7, 2016 / tgexp

Shane Rogers, Jamaica 2016

With the funds donated to The Gleason Initiative Foundation, Team Gleason was able to pay for Shane Rogers, his wife Christie, and their two children to vacation in Jamaica! Below is a letter we received from Christie about their trip.

Lauren,

Hello, Christie Rogers here.  Just wanted to say thank you so much for your support for our Jamaica Vacation.  We had an excellent time.  The kids and Shane and I will certainly cherish the memories we were able to make thanks to you. .  We were able to snorkel a bit, go on a glass bottom boat ride, and Shane and I just relaxed by the pool or Oceanside and watched the kids swimming and trying to catch crabs on the beach.  The kids even got to try out scuba equipment in the pool.  Everyone at the resort was super nice, and there was always something good to eat at any time of day.

I cannot express what this trip meant to all of us.  Timing is everything, Shane had an appointment with his Dr. when we returned, she told him his disease if starting to progress at a faster rate and that he has to use either his walker or wheelchair from now on, and that a cane is no longer enough, so the memories will be even more precious.

As promised we took a lot of pictures, I  selected a few to pass on to you.

Let me know if the pictures get to you ok, and again, thank you so very much.  Possibly the only chance we will ever have in our lifetime to do something like this and we will never forget it.

God bless you all.

Christie Rogers

 

May 4, 2016 / tgexp

Sarah Coglianese, Jazz Fest 2016 New Orleans, LA

With the funds donated to The Gleason Initiative Foundation, Team Gleason was able to bring Sarah Coglianese, her husband Rob, and their beautiful daughter Scarlett to New Orleans for Jazz Fest! The weather had a different plan and Jazz Fest ended up being cancelled on Saturday, but that allowed for a fun day of hanging with them over at Steve’s house. Sometimes things just happen for a reason. Sarah is an incredible writer, so we will let her tell you about the trip. You can follow her blog at http://www.speed4sarah.com.

JAZZ FEST, BUT NOT REALLY

May 2, 2016

I am overflowing with words and nothing can keep up with me. Definitely not my own mouth, not my dictation device, not my energy level, that last whittled down by a late-night arrival into San Francisco after a trip to New Orleans that feels almost like it was a dream.

It’s May. It’s ALS awareness month. That’s worth discussing for an entire blog post. But not today. Rob just got home from work. He said there are two huge boxes outside, and then brought them in. Wedges for my bed, sent by Team Gleason when I was clearly envious of Steve’s. A kind gift on top of a weekend of kindness.

For anyone who’s not familiar with Team Gleason or Steve Gleason, the quick story is that Steve was a safety with the New Orleans Saints, and was diagnosed with ALS in 2011. Since that time, he and his organization have worked to make life easier for other people with ALS. Steve focuses on technology, and on being proactive in the face of the disease. Through the Adventures side of his team, people with ALS have been invited to experience the kinds of things they might have assumed were beyond them post-diagnosis.

That’s where we come in, with an unexpected email I received one day in March, asking if there was any chance we could pull ourselves together for a trip to New Orleans and Jazz Fest. Rob was just starting a new job, and this trip would take place on week two. Scarlett’s spring break had just ended, and we would have to take her out of school. As for me, I was free as a bird, but a little less confident about flying.

It took us three minutes to decide we were in. We didn’t want to miss this opportunity to meet Steve, to see amazing music, to explore a new city, to see if Scarlett liked beignets (spoiler alert: She did not. But she did enjoy licking the powdered sugar off and then having a meltdown 15 minutes later during Paul Simon’s set. Great fun for all.)

And I flew! In a plane, which hasn’t happened since last May. I thought it might never happen again. The flight was uneventful, which is really all you can hope for, although my butt was hurting a lot during the end, and I think Rob was starting to get annoyed with me for hissing at him about it. If you have padding on your butt, just enjoy it. Don’t try to get rid of it. For me, sitting down often feels like I’m balancing on two ice skate blades. I never did have a good butt.

In another exciting turn of events, my youngest brother found out we would be in New Orleans, and decided to drive down from Chicago with his girlfriend to hang out with us. Total bonus.

And suddenly there we were, at a hotel in The Big Easy on Friday morning. And several hours later, there we still were, in the hotel room. It was taking forever to get moving. If anyone was at fault, it was me, because I was having ALS related stomach issues upon which I will not elaborate, except to say that if you dehydrate yourself for hours on end so as not to use the airplane lavatory, you will pay the price for it later.

I sat and tried to drink a cup of tea, while Scarlett played on an iPad that she had decorated with Team Gleason stickers, and Rob caught up on some work. But I felt frustrated, like we were missing something by not being out in the world of New Orleans at every moment. Then I looked around the room at my family, and I realized that there will come a time, probably for everyone alive, when they would give anything to sit in a hotel room comfortably with the people they love, and just do nothing. So I decided to go with that. Even though we’re no longer quick to go anywhere, even though my body loves to come up with new ways to slow me down, there I was and it was all good.

This is an ALS mind game I play often. It’s pretty simple and it works like this: something awful, worse than ALS happened, and I traded it for this life. I chose ALS. So now there’s no complaining, because I got what I asked for, and I can handle it. It’s better than the alternative, even if I’m not sure what the alternative was, and even though I know that life is not actually a fairytale.

Except, maybe in some ways it is. On Saturday, we went to Steve’s home, which was full of friends and family. At one point I was laughing so hard, I had to ask them to stop being funny because I was starting to get dizzy. When the rain came, and Jazz Fest was canceled for the day, no one cared. We ordered pizza, and watched videos of Steve’s best friend Tony prank calling everyone they know. Scarlett was in heaven playing with four-year-old Rivers Gleason.

We were whisked away to another land, we laughed and ate and made new friends. We had an adventure. And while we were there, amidst all the smiling faces, Scarlett walked up to me and said “This is the life.”

IMG_5656-400x400IMG_5657-400x400

http://www.speed4sarah.com/jazz-fest/