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May 18, 2017 / tgexp

Lillian Eberhardt Technology

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Thanks to the funds donated to the Gleason Initiative Foundation, Team Gleason was able to provide Lillian with a TobiiDynavox I-12+ (communication device) and a Rehadapt rolling floor stand. Thank you!

After Lillian’s ALS diagnosis in November 2016, a social worker at the Mayo Clinic in Jacksonville, Florida told Lillian’s daughter about Team Gleason. She then reached out and Team Gleason was able to provide Lilliam a TobbiDynavox I-12+ and a Rehadapt rolling floor stand.

“Mom has the biggest smile when she uses her speech device. Mom used the device to communicate with PALS we met for the first time. Having the speech-generating device made it easy for a large number of people to hear what [she was] saying.  The device made it easy for Mom to make new friends.  

One of the many custom pages available for download was made by a Mom for her Son that uses funny sayings from a card game.  The first night after the device arrived, my husband programmed that page for Mom to use, and she couldn’t wait to show me when I got home from work. I hadn’t seen her laugh that hard in many years.  

Mom uses the device every day. The stand that came with the device is beautiful and sturdy, and so helpful because Mom is in bed all day.   We programmed fun pages that make animal noises when you touch them. Mom presses the animal noise buttons all day long and through the night as well. Mom has the fronto-temporal dementia that sometimes comes with ALS.   I believe she is exercising her mind more now by actively interacting with device rather than passively watching television.  

The device has been a huge help to our family now, but it also gives us peace of mind for the future to be able to turn on eye gaze when she will lose her ability to write.  Knowing that we will have a way to communicate with Mom gives our family tremendous peace.

-Natalie Squirtiro, daughter of Lillian Eberthardt (pALS)

Here is a video of Lillian and her family thanking Team Gleason but we’re using this post to thank you – thank you for enabling Team Gleason to help pALS across the country!

 

 

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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.

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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!”

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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.  
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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”.

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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

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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.

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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.

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