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April 22, 2015 / tgexp

Bert and Jennifer Lange, Eye Technology

Liz & Everyone at Team Gleason, 

Thank you from the bottom of our hearts for providing Bert with the tobii eye gaze.   Bert always said one of the most difficult things for this disease to take is his voice, his means of expression and communication, that was a great fear of ours.  The tobii is amazing,  and the fact that we do not have the worry of the device being locked or taken,  that Bert can use it to its full potential is a huge relief.   This tobii is a huge positive for Bert,  a motivator to continue to have a voice and to want to use it to keep advocating for ALS.   Steve Gleason and Team Gleason is a huge inspiration to all of the ALS community and to Bert and me, this disease is hard in so many ways but acts of kindness like this and all that your organization does for people living with ALS helps so much.   Thank you doesn’t seem like enough,  know that we are so grateful. I took a few pictures and I wanted to make sure it was OK to share them on social media and post a thank you? Bert has been using the tobii since it arrived and is doing really well with it.   We think it is awesome that your cell phone can be set up and that it has an alarm and email and just all the amazing things it is capable of.  We were surprised at how natural it seems to become,  our kids think the voice is cool so we have their stamp of approval :) Technology is key. Thank you,  thank you,  thank you. 
Bert and Jennifer Lange 
#webelievefightals #notquietly #nowhiteflags


   

 

April 21, 2015 / tgexp

Scott Thomas, New Orleans, LA 2015

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With the funds donated to The Gleason Initiative Foundation, Team Gleason was able to send Scott Thomas and his fiancee, Sarah on an unforgettable trip to New Orleans, LA. Steve and a few of the other team members were fortunate to have some free time to be able to spend with Scott and Sarah as well. Below is a summary of their visit:

Our Team Gleason Adventure.

My Fiancé Sarah and I arrived in New Orleans on a Tuesday night at 9 pm. We went straight to our hotel to rest up for the big week ahead of us. We were pleasantly surprised to walk in to our hotel room and see the bed covered with Team Gleason and Mardi Gras swag. A TG flag, t-shirts, bracelets, stickers, decals, tickets to a Pelicans game and Annie, Mardis Gras beads, feathers, and a King Cake (Google it, it’s a delicious and fun tradition).
Wednesday was pouring rain all day. So, we dedicated the day to staying inside eating delicious food and drinking great local beer. That night the rain subsided, and we made our way to the Pelicans vs Thunder game. Great seats and hospitality from the arena staff. The game was tight til the end. Westbrook went off for a career high 45 points.
Thursday was our day for exploring the city. Started out having a fun breakfast at a local spot called Jimmy J’s. The waiter was hilarious. He entertained the small room with voodoo stories and magic tricks. We then made our way to beautiful Jackson square. Listened to talented jazz street performers, walked around the historical cathedral, then headed to the French market. Made our way through the market then walked along the great Mississippi River. We took Bourbon street back to our hotel. Ooooofta! And I thought the Vegas strip was wild!  Had some dinner and New Orleans signature drink the Hurricane, then called it a night.
Friday we celebrated Sarahs birthday with Team Gleason. We hailed a cab and made our way to the Saints training facilities. Tommy of TG met us in the lobby and took us on a tour. Saw a couple pictures on the wall of Steve sporting the goldi-locks hair do. He’s a big deal all around the world, but he’s a really big deal to the Who Dat nation and the city of New Orleans. Sarah waited in the hall while Tommy took me into the locker room, (didn’t want to give her to much of a culture shock!). Chatted with some equipment guys and met a player who might have been related to the Incredible Hulk.  Felt like I was a toddler shaking his hand. Nice guy. We rejoined Sarah and made our way into the cafeteria shared with the Pelicans. We pulled up to visit with Rob Ryan and a table full of staff. All very nice guys. We then got the pleasure to finally meet Lauren of TG, (she set up our trip and is AWESOME). Spent the rest of the time before Steve showed up visiting with Steves old coach Greg McMahon. Just a really kind, genuine guy, and he wasn’t going anywhere until he got to say hi to Steve. Once Steve and Blair of TG arrived we spent a while visiting. Then we all went and played around in the indoor field and weight room. Took some photos with Steves iconic punt block banner in the background. Steve was gracious enough to invite us to check out his home automation. He showed us how he runs his eye gaze and home automation, helped answer our questions in regards to my eye gaze, and was sincerely interested in making sure we were set up well. We got to meet Steves beautiful family. We then had birthday dinner for Sarah, went to Annie, and caught the tail end of a Mardis Gras parade. Awesome day full of unforgettable memories.

Takeaways:  New Orleans culture, it’s food, it’s people, it’s everything are incredible!  I now love the Saints and will root for them as long as they’re not playing the Steelers. Steve and the rest of Team Gleason are some of the most special people on earth. Sarah and I are so grateful to TG for hosting on our adventure, and for everything they do for the ALS community.

No White Flags!
Sincerely,
Scott & Sarah
 ST4ST3ST2ST
March 11, 2015 / tgexp

Scott Hickman, Tobii

With the funds donated to The Gleason Initiative Foundation, we were able to provide communication technology to Scott Hickman.

Check out his letter to Team Gleason below!


Hi Team Gleason,

Scott, my wife Shelley and I would again like to thank you for your great generosity in providing the Tobii voice equipment for his use.  He got it set up last week, and is learning to use it. 

We commend you for the way your organization handled our request with minimum red tape, promptness and courtesy. We appreciate that you are making the equipment available for Scott’s use, and require it to be returned to you so that another ALS patient will have the benefits also.  I assure you that it will be returned promptly and in good condition.

Thanks for all you do to draw attention to this terrible disease, and help those afflicted with it.

Best to all of you.   
 
David S. Hickman



February 25, 2015 / tgexp

Jeff Arison, Tobii PC Eye Go

Dear Liz and Team Gleason,
I cannot begin to express my gratitude for your most generous gift of the TOBII PC Eye Go.
Liz, I appreciate so much your kindness, compassion, guidance and expertise as we talked about what technology might best suit my needs. When I originally reached out to you, I was merely looking for your expertise and as we continued talking and you shared that Team Gleason would be willing to set me up with the TOBII PC Eye Go….I was excited, humbled and grateful.
You all make such an amazing impact and difference in the ALS community and I will be forever grateful for all of the kindness and generosity you have shown me. Thank you does not seem to express how grateful I feel.

I will be sending a picture soon, but wanted to make sure you knew this amazing gift arrived.

NWF
With Gratitude,
JeffArison

February 25, 2015 / tgexp

The Sorks, Lift System

Dear Team Gleason,

Words are often inadequate to express my joy for your invaluable help & support. Michael and I deeply appreciate all that Team Gleason has done for us. Thank You.

Your recent gift , the Liko lift system has given new meaning to feeling good and wanting to get healthier. I have been physically transferring Michael by myself every day for almost 4 years from bed to shower to bed and then his chair , again from chair to bed at night. There were very few days that I would wake up without any back pain due to a small fracture in my lower spine irritated by the lifting, but we did what we needed to do . People would ask why not use the Hoyer lift? Good question, It took more effort ,work & strain to maneuver it around accompanying Michael’s vent. It was bulky and he had trouble breathing freely.

The Liko lift has made transferring almost effortless . Michael is comfortable and can breathe. I now wake up with no more back pain and feeling great. So great , that I have now enrolled in an exercise class along with eating healthier and wanting to change. But most importantly, I can keep up with Michael now…

We are so grateful for all the things you all do to improve the lives of pALS & cALS living with the beast. #NOWHITEFLAGS

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February 25, 2015 / tgexp

Lori and Doug Hillman, Eye Technology

Hi Team Gleason!

On behalf of my wife Lori Herman, we wanted to send a very big ‘thank you’ for the Tobii system that just arrived on our doorstep today in Seattle. This piece of equipment has arrived none-too-soon as Lori’s voice is getting weaker each week. She has so much to share, this tool will get a big workout.

We can’t thank you enough for helping us live life to it’s fullest. No white flags here!

Thank you, thank you, thank you!

Doug Hillman

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February 20, 2015 / tgexp

Carrey Dewey, Disney Cruise 2014

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With the funds from The Gleason Initiative Foundation, Team Gleason was able to send Carrey Dewey and her family on an amazing adventure. A Disney Cruise has been something Carrey and her family have wanted to do for a while. She originally wrote in requesting only a grant to help fund part of the trip.  When we shared the news that we were going to fund the entire cost of the trip, this was her response:

“OH MY GOSH!!!  SERIOUSLY?!  JUST LIKE THAT?!?!  I’m speechless….. other than the noises of my sobbing & snot face balling at this email.  That is amazing and beyond generous….SERIOUSLY Lauren?!?!  Thank you for sharing my email with the Team and I assume,  speeding it up!!  I am just shocked, tell me who to hug (besides you)– of course I will do it properly and advocate but to sponsor our ENTIRE COST for our  family on a dream trip just like that….{tons more happy tears– I think the first happy tears in a few months} — beyond imaginable, SERIOUSLY?!

My dx has been a real…. (can’t think of the appropriate censored word); I have felt so lifted by people we have shared with, either in prayer or kindness.  But this beyond lifts me, it down right shoots me to the moon with elation!!  My little family family can share this dream trip together without being financially depleted!  I worry b/c my kids are young,  but they’ll  remember this for sure!”

Carrey’s response is a great reminder of why Team Gleason’s mission is to send people on extraordinary adventures. It’s truly amazing to be a part of such an incredible moment. Steve’s vision is to affect people in exactly the way Carrey’s email expresses; excitement and passion in the midst of such a devastating reality.

With the help of Michelle Marx from Meesh Travel (www.meeshtravel.com), the Dewey’s were able to set sail with all loose ends tied! After Carrey’s Cruise, she blogged on her facebook page: www.facebook.com/TeamDeweyALS

“Home after an awesomely amaaaazing family trip!! As first time Disney doers & cruise goers, we had a lot to get done on our bucket list! Magic Kingdom at gates open, both parades, space mountain twice, Elsa & Anna, Dole whips and fireworks; Disney Cruise with all our favorite character friends, dolphin swimming at Atlantis, snorkeling, cruise food and more food, and Colleen’s favorite…. flying above the clouds. My perspective was different on this trip….it really was amazing! I definitely want my family to go back, hopefully with me too!!

A very special thanks to Team Gleason for wanting to be a part of our family trip! You guys are waaaay beyond awesome– on all fronts!‪ #‎nowhiteflags‬ here!!”

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