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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 PAL – 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

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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

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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

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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.”

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

April 29, 2016 / tgexp

Bobby Forster, French Quarter Fest in New Orleans, LA

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With the funds donated to The Gleason Initiative Foundation from Bobby Forster’s former employer, Need a Ride Pedicabs, Team Gleason was able to bring Bobby back to New Orleans, LA for French Quarter Fest!  Bobby’s friends and fellow pedicabbers put on a fundraiser for him while he was in New Orleans to help with his medical expenses.  He is a special guy and much deserving of a fun adventure back to a city he loves, New Orleans!  Here is the letter Bobby wrote to Team Gleason after his Big Adventure to the Big Easy! 

 

Dear Team Gleason,

Thank you so much for making my recent trip to New Orleans a reality for me. New Orleans is a place that I hold near and dear to my heart. The last time I was in New Orleans was two Mardi Gras ago. It was while marching in Muses that I proposed to my wife Casey. I have wanted to get back sooner, but complications with ALS made it difficult to travel for a while.
While I was here, I was literally able to see over a hundred friends that I have been missing dearly. I got to go to a great event that my friends put on as a fundraiser for me. I went to a boil. I went and got a Parkway poboy and ate it at Bayou St. John. I was able to enjoy French Quarter Festival and hear some incredible music that I rocked out to with friends. Most importantly I got to be a normal person and just relax with people I love and make unforgettable memories.
This trip literally meant the world to me. I am sure you all have felt this before, but when you are away from New Orleans for too long, you literally ache to be back. I am so thankful that you guys made it possible for me to come home and see my New Orleans family.
Love,
Bobby Forster
February 19, 2016 / tgexp

Waka Kickball Tournament to benefit Team Gleason

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On Saturday, November 14th, hundreds gathered in City Park to play in the kickball tournament of the year! Waka Kickball league hosts the Waka Charity Kickball tournament in the fall to raise money, awareness, and support for Team Gleason.

Players were lead by Jennifer Gaubert in the National Anthem followed by a half-time performance by the Sirens of New Orleans. This year, more than $20,000 was raised for The Gleason Initiative Foundation by team entry fees, raffles, jello-shot sales, merchandise sales, a percentage of Parlay’s bar sales and other misc. donations from various individuals and corporate sponsors. Steve even joined the fun for the majority of the event!

We would like to send a huge thanks to Sean Gaubert, the Director of the New Orleans Waka Chapter, and Tabitha Diecidue for their tireless efforts in making this event happen year after year. The continued success of this event is a direct reflection of their continued support and dedication to Team Gleason.

Team Gleason loves Waka Kickball!

 

February 19, 2016 / tgexp

Roxanne Green, Receives Eye Technology

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With the funds donated to the Gleason Initiative Foundation, Team Gleason was able to provide Roxanne Green with a Tobii Eye Gaze System.

 

“First of all, I want to thank The Steve Gleason Foundation and Steve Gleason and his family for my Tobii. I want you to know how important it is to me and my family. It has helped me to communicate with the outside world in so many ways. My boys get so excited when they hear me talk with the Tobii, they laugh and laugh and always want me to say their names. My family and I are believing for a healing or cure everyday.” – Roxanne Green

Roxanne is a mother of 4 boys. She says her sons make getting out of bed worth it everyday. With the help of her communication device, Roxanne remains an active and vital part of her children’s lives. She can communicate with teachers through email and text as well as check on homework, projects and grades again.