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May 27, 2015 / tgexp

Susie & Steve DePascale, Eye Technology

With the funds donated to The Gleason Initiative Foundation, we were able to provide Steve DePascale an eye technology kit.

See below!

Dear Team Gleason,
We wanted to write you to thank you from the bottom of our hearts for your generously in sending me the WinSlate 13 Eye Gaze Device.
After being diagnosed in August 2011, my progression has pretty much been the same as Steve’s. Starting with arms, than legs, then breathing. Within the first 2 years, I went from being a successful business owner to being totally paralyzed,confined to a wheelchair, depending on ventilator around my nose 24/7.
To say that the device came in the nick of time is an understatement! My speech has deteriorated so much, that my wife, kids, friends & caregivers can barely understand me. Not only that, I’m going to have to get a feeding tube placed because I can no longer swallow solid foods. This is normally a pretty routine procedure, but when I went to get it done 2 years ago, they could not do it because of a prior stomach surgery. Now it has to be a full blown surgical procedure. My doctor is preparing me to the fact that I’ll probably come out of the surgery having to have a Tracheotomy also because my breathing is so bad.
While this wasn’t the end of the world for me, what was the worst was the fact that communication between my loved ones, caregivers & my wife, Susie, would be limited at best. I wasn’t sure I could’ve handled that.
Then low and behold Team Gleason came into our lives! With you’re generous donation of this device, I no longer fear the fact I’ll probably never speak again. In a few months I have mastered the device to the point that I don’t miss my desktop computer one bit! The fact that the unit is unlocked is a game changer. I not only use it for speaking, but also for texting, controlling all my TVs, controlling my Sunos music system, surfing the web & emails. I wrote this email with the device. After having to fight with Medicare/Medicaid for everything I need, The thought of having to deal with them again to get a far less functional device was disheartening.
My entire family thanks you Steve & you’re entire organization. You are truly an inspiration for all you do for ALS patents. You’re grit & determination to raise awareness for this wretched disease is unbelievable. It makes me feel all is not lost.
God Bless you ,you’re family & Team Gleason.

#No White Flags

Susie & Steve DePascale
   
 

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
April 8, 2015 / tgexp

Susan Speranza, trip to see her son in Columbia, South Carolina

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With the funds raised by Zooneyfest (www.zooneyfest.com), Team Gleason was able to be a part of sending Susan Speranza on an unforgettable trip to see her son. This would not have been possible without the wonderful people at Zooneyfest, especially Jared Bowling. Thank you for making this happen and for including Team Gleason. Please read the below letter from her son, Julian. 

Hi Team Gleason,

First and foremost, thank you. Thank you with all my heart! Without your organization and the help of Zooneyfest, the amazing and memorable experience I am about to describe would not have been possible.

My mother was diagnosed with ALS almost 4 years ago and she is a shining example of how a positive attitude can make the most unbearable disorder, bearable. But unfortunately after I completed my training in medical school, I began working in a hospital 5 states away and more than 700 miles from her in New York. I am a neurology resident physician and I am on the forefront of ending this horrible disorder once and for all. Like most physicians, I have a busy schedule and am not able to enjoy as much time as I would like with my mother. Up until last week, my mother had yet to see my beautiful new home and city in South Carolina. That is when with the help of Team Gleason and the Zooneyfest organization from NY, my mom’s one and perhaps last wishes became a reality.

My mother took a direct flight with her identical twin Sandy (who is not affected by ALS), caregiver Michele, and son Aaron to my new home town of Columbia, South Carolina. We were able to spend some quality time together here in Columbia; she was able to see the hospital I worked in and we were able to enjoy some excellent dining before we headed to the beach. At the beach, my mother was able to see the beautiful ocean and dip her feet in the sand thanks to the customized wheelchair provided by the local fire department. We had such a great time and I could just talk for hours about the fantastic time we had. My mother, aunt, caregiver and son had a blast and so did my fiancée and I!

Thank you again for everything you did and for everything you do on a daily basis to support the cause. I am confident that in the very near future, we will end ALS!

No white flags!

Sincerely,

Julian Duda, MD

Son of the bravest and most inspiring mother, Susan Speranza!

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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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