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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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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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January 16, 2015 / tgexp

Larry McCravy, Caribbean Cruise 2014

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With the funds from The Gleason Initiative Foundation, Team Gleason was able to send Larry McCravy and his beautiful wife, Debbie on an unforgettable adventure. It just so happens it was their 40th wedding anniversary as well! When we shared the news with Larry, he had one of the best responses:

“WOW, I AM SO EXTREMELY EXCITED I COULDN’T TALK AND THOUGHT. I might wet my pants. Lol.
I will talk to my wife and get back with you asap. She is at work right now.
I STILL AM IN SHOCK. IN SHOCK.
THANK YOU, THANK YOU, THANK YOU! !!!!!!!!!!”

With the help of Michelle Marx from Meesh Travel (www.meeshtravel.com), we got the ball rolling, and they were setting sail in no time! Below you will read their emails to Team Gleason when they returned.

“Our trip was amazing and one I will never forget! Everything went smoothly and we are so very very grateful to you, Steve, and Team Gleason for giving us this trip of a lifetime. The tours, excursions and massages were wonderful too.

The best anniversary and Christmas trip ever. Debbie went snorkeling at the Pitons, in St. Lucia. She said it was like putting her head in a giant aquarium as the fish were so beautiful with the different types and colors. St. Lucia, St. Kitts, St. Thomas, and St. Martin were all beautiful. I got to go on a couple of tours when we found vans that had power chair lifts. The tours were amazing and the tour guides let me out at each stop. Our room on the ship was huge and great for accommodating the wheelchair. The room was for handicapable people from the living room to the shower areas. I would highly recommended room 7228 on the Carnival Valor. Oh, the banana daiquiri s were also great. !!
This was really a dream come true , bucket list trip. Thank you all a trillion times over. !!!!”

-Larry McCravy

“Happy New Year to you!  And THANK YOU FROM THE BOTTOM OF OUR HEARTS for our wonderful Christmas cruise!!  We had a wonderful time filled with fun, sun and beautiful islands. Larry did so good in his power chair the entire time and the handicapped accessible suite and bathroom on the ship worked out perfectly for him!!   Our private balcony was the size of two rooms and it was so awesome to lay in our bed and have the curtains open to watch the sea and scenery and wake up with the sun every morning!   And can you believe it – the couple we sat with at dinner had lived in Charleston for seven years!!   He is a pediatric oncologist and worked at the same university (MUSC) as I do!!!   We know the same people that I work with!  And his wife has MS and was in a scooter on the ship.   We became friends and even went snorkeling at the base of the Pitons in St. Lucia!!  It truly is a small world!!   Larry was able to go on two handicapped accessible tours in vans with hydraulic lifts, one in St. Thomas and one in Barbados which was fantastic!   The one day I went out by myself Larry treated himself to a massage and his first ever facial and shave!!!!   He was very excited about that was totally relaxed and looked great!  I also enjoyed a wonderful hot stone massage one day.  The airline treated Larry very well and took him right up to the airplane door in his power chair at each connection.   We had no problems whatsoever with his power chair and were so grateful for that.  Larry was able to go all the way into downtown St. Maarten with his chair and ride along the boardwalk where we enjoyed a wonderful lunch on the beach!   We couldn’t believe we were actually in St. Lucia on Christmas Day!!  The water in Barbados was turquoise clear and we had conch fritters for the first time!!  We both wore our Team Gleason T-Shirts for the day and on our tour in St. Thomas and loved it when people would ask us about the shirts so we could share our wonderful story of our amazing gift and the generosity of Team Gleason!!!!!!!!    We can’t thank you enough for the memories we now have of such an amazing experience!!!!!

Lauren – you’ve been such a super sweet and dear person to Larry.   He’s been so happy to get to know you on Facebook.   His smart phone is such a blessing to him and I’m so glad he can use it to keep in touch and communicate with people.   It’s just incredible that we received this gift from Team Gleason.   I’m sure you know Larry is special from your communications with him.  He really is.  We met on a blind date in high school and are still madly in love after 40 years.  We lost our only child, a beautiful daughter, Leslie, when she was murdered in 2007 as the result of domestic violence.   Larry found her.  We lost our whole world that day and miss her terribly.  Larry was diagnosed with ALS just six months later.  It just didn’t seem possible or real.  Exactly one year later I lost my corporate banking job of 20 years out of the blue.   I share this with you to let you know that Larry has been through so much and I’m just so happy that he received this gift.   We are very grateful and blessed that Larry is still here and his progression is slower than so many others.   We started a 5K Race in Leslie’s memory and have since raised over $100,000 to help our local no-kill animal shelter in her memory with an annual run/walk.   And I found a great new job and work with wonderful people.  We participate in all the local ALS events we can and want to give back as we’ve been blessed.   We thank God for each and every day!!!”

-Debbie McCravy

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April 28, 2014 / tgexp

Stephen Finger, Jazz Fest 2014

With the funds from The Gleason Initiative Foundation, we were able to bring Stephen Finger and his wife, Cara to Jazz Fest this year in New Orleans, LA! See below for his blog about the weekend.

http://stephenfinger.wordpress.com/2014/04/28/jazzfest/

When I saw the JazzFest lineup come out a couple of months ago, my jaw dropped. Friday included Jason Isbell followed by the Avett Brothers. My two favorite bands playing back to back in New Orleans no less. However, our spring was already pretty packed. I had a work trip and college reunion. Cara had a couple of the work commitments. We were headed to the beach with the kids. After a couple of calm months in the early spring we were heading into a crazy stretch. Then a couple of days later I got an email from Lauren Bowman from Team Gleason inviting us down. Too good to be true. So I got up the nerve to ask Cara about adding another event to our schedule and luckily the thought of a quick getaway with few New Orleans meals thrown in was enough to tempt her into saying yes.

So we were down there last week from Thursday to Sunday. My parents came down and looked after the kids in Columbia and we snuck away for our getaway. Maybe we don’t do these enough. A chance to take a deep breath and enjoy each other’s company. With everything going, that can get lost in the shuffle.

The trip could not have been better. We got in Thursday and had two fabulous meals. We have eaten well in New Orleans before, but our dinner Thursday night at Clancy’s just seemed perfect. The food, the champagne, the atmosphere, the company. After a breakfast of beignets on Friday in the French Quarter we headed over to JazzFest. Michel Gleason texted us a list of “must eats” and it did not disappoint. After living in the Carolinas for the past 12 years, I have learned to take pork very seriously. She recommended the cochon du lait. Amazing. I mean you are at this music festival, great music, good times, and when you want a bite to eat you are blown away by the food. The cochon du lait would be a treat at any price, at any restaurant, but at JazzFest it is just that much better. Both Jason Isbell and the Avetts put on great sets. We met up with my aunt and uncle who have lived down there forever and happen to be about the two coolest people we know. Way more interesting than Cara and I will ever be. They served us a great shrimp supper after the festival and then snuck us into their daughter’s art exhibit (http://www.chillplease.com/). I mean, how cool is that?

A couple more great meals and another great day at the festival and then we had to pack up and head home. From purely a getaway perspective, this was a perfect trip. Tremendous meals. Cara got to sleep in. I got to see two of my favorite bands. We got to spend a few days doing nothing but spending time together. No kids. No touristing. Just us together eating and listening to music.

But for all the fun we had, still the best part of the trip (other than spending time with my wife) was getting to meet the folks from Team Gleason. We met up with them Friday afternoon during the Avett’s set. They seem like the epitome of New Orleans. Great people, who love to have fun, and with the utmost sense of community. They rolled into the festival as a pack. Blair and Lauren, the two full-time Team Gleason employees, along Steve, Michel, her brothers, their wives, their friends etc.. Talking with them, you knew you were a part of something special. We knew we were not alone. They are devoted to improving the lives of families facing the disease. Hanging out at the festival, not only do you see how everyone in the city is inspired by and has rallied around Steve, but also it seemed that half the people that walked by were old friends now helping with Team Gleason. People who, inspired by Steve, were working to support his family, and all families dealing ALS. We, as members of the ALS community, are incredibly lucky to have had them adopt our cause, and more importantly it shows how one individual can rally people to act.

As my uncle was driving us home on Friday night we passed by St. Margaret’s Hospital, home of the Team Gleason House for Innovative Living. This facility is equipped to allow people with ALS, whose minds are perfect but are limited physically, to live more independently. People who can still lead productive lives in the right technological environment are able to control everything around them through their computers. Today they announced the Saints owner, Tom Benson, donated $5 million to establish an endowment to cover the facility’s operating expense. Steve says he sees no reason why every NFL city couldn’t have a similar house. If the community of people supporting the cause continues to grow, there is no reason they can’t.

Getting to meet Steve was an incredible honor. One of Team Gleason’s taglines is, “Awesome ain’t easy”. It is clear that there is nothing easy about his situation, but that makes everything he does that much more awesome. He couldn’t communicate through his tablet in the sunshine. How is this possible? In talking to people living with ALS it is clear that making people’s lives easier, makes them live longer. There is nothing more essential to quality of life than the ability to communicate, but we haven’t figured out eye tracking technology that works outside? This seems like something a few grad students could figure out. These are solvable problems that Team Gleason is working to solve to improve people’s lives. But even with this limitation, it didn’t stop Steve from being incredibly gracious to Cara and me. Incredibly gracious to everyone who came up to say hi. It didn’t stop him from making jokes at his wife’s expense. On Saturday, he tweeted that he didn’t feel up for going to JazzFest but then followed it up saying “ALS is a training for wanting only what you have. As you have less, learn to want less. Find new, creative ways to explore and expand.” I know nothing in my future will be easy, but after meeting Steve I know there is no excuse for not making it awesome. Thank you to Steve and to all of Team Gleason for an incredible weekend. No White Flags!

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