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April 2, 2014 / tgexp

Lisa LaFaver

We’ve heard lots of praise about Lisa LaFaver from friends and family via email and social media.
So – we were excited to assist she and her family in buying a new van.
With the money brought in from a successful fundraiser the LaFavers held at The Howlin Wolf and the generosity of Superior Vans here in New Orleans, we were able to offset the remainder of the cost of the van with the funds donated to The Gleason Initiative Foundation.
See below from the awesome LaFavers!
Thank you, thank you, thank you!  I can’t say it enough.  Also, please, for me and on behalf of Lisa, please thank Steve, Michel and anyone else at Team Gleason who had a part in the granting of your huge donation that made this van possible for us.  It is such a blessing for Lisa to be able to travel now in her chair, as well as her caregivers, and friends/family.  Up to today, it was nearly impossible for anyone to take her anywhere without me being there to physically lift her and move her in and out of our Honda van.  We went to lunch today and it was so convenient for me and Angie (caregiver).  More importantly, it was so much easier on Lisa, physically and mentally, to be able to stay in her power chair the entire time.  Having this tool will be, as Steve says, ‘It’s gonna be awesome!’

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February 10, 2014 / tgexp

Rich and Tina Wagner

We love the story of Rich and Tina Wagner. As you will read below, Rich reached out to Team Gleason to ask if  we could give his wife a weekend getaway for all the help she gives him daily as his caregiver.  However – when we offered her the trip, Tina said she would rather spend the time away with Rich.

With the money raised for The Gleason Initiative Foundation, we were able to send Rich and Tina on a relaxing weekend getaway. See below for letters from Tina and Rich.

Lauren,
    I am writing to you and all of Team Gleason to thank you for the wonderful weekend getaway you gave to myself and my husband, Rich. As you know, it is my husband who is currently suffering from the debilitating effects of ALS, not me, but the weekend was for me!!! Crazy…  As my husband sits on the couch daily watching me care for our home, our two small children, and himself, instead of him seeking out some sort of adventure or trip for himself, he contacted Team Gleason to see if they could help give me  a break and send me away for a weekend.  I was unbelievably touched by his kind concern for me, not himself!!  I am a very lucky lady.
   As anyone in my shoes could use a weekend off, I said yes, yes, yes, but insisted that any weekend would have to be with Rich. Team Gleason was happy to accommodate, and so we were off. We live in Long Island, NY.  We decided on a weekend spent 1 day in Mohegan Sun, in Ct., and our second night in Greenport, NY, on the easternmost tip of the north fork of Long Island. It was wonderful.!!  I had a massage, we played some slot machines, had a delicious dinner and then saw Jefferson Starship in their Wolf Den. The next day, we took a ferry across Long Island Sound to Greenport, where again we had a delicious dinner, then did some window shopping and lunch the following day before leaving. It was a perfect getaway from the daily grind of life as we know it, for both of us. I could not have been happier!! We love our children more than life, but to be able to have this great break knowing they were in loving hands, it was the best!!! So, thank you again and again to Lauren, Steve, and all at Team Gleason for making this happen. Thank you for helping me to keep my sanity during  this surreal journey I take with my children, our families, and my wonderful husband, Rich Wagner.
Tina Wagner 😊
Hi Lauren,
                  The getaway was really nice! We left Friday morning and drove up to Mohegan Sun in Connecticut- it took about 2 1/2 hours. Tina had a spa appointment to get to almost immediately when we arrived. Apparently, they are booked solid on weekends for spa appointments because there weren’t any open times later in afternoon or on Saturday morning. So I went to the room while Tina had a massage. After she got back we went downstairs for some gambling and dinner. We are not big gamblers so we tried some video poker machines. Within 5 minutes I scored 4 of a kind and cashed out for about $100! We puttered around for a little while after that because we had an early dinner reservation. We went to Bollo, an Italian restaurant and had a wonderful meal. After dinner there was a free concert featuring Jefferson Starship. They were very good and played all the songs you’d expect to hear from them including “white rabbit”, “somebody to love”, “miracles” and “count on me”( our wedding song!). The next day we left because Lady Antebellum was playing and the hotel rates doubled. So we took a ferry across Long Island Sound to Orient Point and drove to a town called Greenport, NY.
It’s a little cozy shore front area. During prohibition it was a final destination for ‘rum runners’. We dined in a small local restaurant named the “frisky oyster”. Once again, we really enjoyed our meals. The main part of the getaway for us was the escape from the everyday minutiae that saps your spirit. So it was very appreciated and needed!  Thank you very much! Pictures to follow shortly.

Rich Wagner

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January 2, 2014 / tgexp

Carla Shearon, Hawaii

We learned about Carla Shearon through Sabrina Schalley. She’s a Patient Services Director at “ALS in the Heartland”, which serves those impacted by ALS in Nebraska and Western Iowa. She’s also a childhood friend of Rian Emmerson, a Spokane member of Team Gleason.

From Rita, Carla’s daughter:
I’m not sure I would have ever used the word “adventurer” to describe my mom when I was young. My parents worked very hard to make sure my brother and I were always in good schools, and never went without anything we needed. This rarely left extra money for traveling, and little time to go on adventures. Now that I’m grown I can appreciate what I never saw before- the adventure in raising two children, the bravery required to forge a path that would allow those kids to go even further in the world than she did.

My mom was diagnosed with ALS in 2008, three years after I moved away from Kansas, where I grew up, to Hawai’i, where I live now. In that time she’s traveled all over the country, from Minnesota, to Nevada, to Louisiana. In all of the years that I’ve lived here we have never been able to work out the travel logistics for her to come visit me where I live. More than just about anything, my mom wants to come to Hawai’i, and see where I live, meet my friends, spend time with her new son-in-law, and experience for herself some of the adventures we go on.

One of the most exciting things a person can do on Oahu is a doors-off helicopter tour, which showcases the majestic Ko’olau mountain range, stunning beaches, and the tallest waterfall on the island! I’d like to take my mom to the Pali lookout and show her the entire windward coast. In the winter there is amazing whale watching, as the humpback whales migrate to the warm waters of Hawai’i to calf. I’d love to take her to the north shore of O’ahu during a winter swell, so she can feel the power of 40 and 50 foot waves crash and shake the ground!

There’s no question my mom deserves to come to Hawai’i, especially in light of how much she sacrificed in order to insure that I could make a great life for myself. If I could do it alone I would, in a heartbeat.

With the funds raised for The Gleason Initiative Foundation, we were able to send Carla and her caregiver, Rick, to visit her daughter, Rita and son-in-law in Hawaii. Steve always wants include adventure in their trips, so we were excited to be able to send the four of them on a helicopter ride! 

Read more about it in the Norfolk Daily News.

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December 10, 2013 / tgexp

Jonathan and Emily Buehler, Seahawks Game

Dave Martin, a TG board member from Spokane, spearheaded a TG adventure for the Saints/Seahawks game at CenturyLink field.

With the help of Dave’s Company, Summit Capital, Anne and The ALS Association Evergreen Chapter, Connie and Casey and The Seattle Seahawks, and Steve’s friend, Ray Hattenburg, the night turned out to be a success. Besides for the Saints loss. :)
Thanks to all of you!

The schedule of the day went as follows:

11:00 am – Ray and I are going to stop by to meet you and your family prior to the game

4:30 pm – Pregame Sideline starts – please plan to be dropped off at attached designated area by 4:15. Anne from the ALS Evergreen chapter has been kind enough to coordinate you transportation to and from the game. Thank you Anne!

5:00 – We will go to our seats to enjoy the game. Max Unger and the Seahawks were kind enough to secure Team Gleason our tickets in Section 209 row AA. Thank you Seahawks!

From Emily:

I wanted to thank each and everyone of you for making the seahawks game such a memorable day for Jonathan and myself. Your kindness and generousity was emotionally overwhelming to know that so many people care about our family. Just knowing we were going to the game was so exciting but finding out we were going on the field put it over the top. Then, Ray and Dave came over to our house to meet us before the game and gave our girls new dolls and played with them. It put huge smiles on their faces and they asked us if Dave and Ray were their uncles. While at the game, we were treated like celebrities from food being provided to even being able to go to the front row of the game with the Summit Capital Gang. Everything from start to finish was amazing. Thank you so much for giving Jonathan and myself this memory of spending quality time together. The experience was incredible but its even more priceless to meet such incredible and inspirational people. Thanks again and hope to talk again soon.
Warm Regards;
Emily Buehler

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November 25, 2013 / tgexp

Nathan Moats, Wheelchair Van

We learned about Nathan Moats from Post Falls, ID from Mike and Jackie Gleason in Spokane. He has a zest for life and a strong love for his daughter Kassy and family.

With the help of Ann Marie Byrd with Catholic Charities of Spokane and the money donated to The Gleason Initiative Foundation, we were able to help Nate secure a wheelchair accessible van to get out and explore the world.

Thanks to everyone involved!

November 25, 2013 / tgexp

Pete Frates, Voodoo Music Experience

Team Gleason has fallen in love with the Frates family, aka “Frate Train”. Pete, his brother Andrew and his wife came down to the Team Gleason summit and we learned that he and his family have a similar love, support team, and passion for life as Steve and his team.

We invited the crew back down to New Orleans for the Voodoo Music Experience . With the funds donated to The Gleason Initiative Foundation and the generosity of Rehage Entertainment and the Mccready Family of Pearl Jam, the Frates had an epic adventure.

Highlights included: hotel stay and van rental, backstage passes at Voodoo, meeting Pearl Pam and an added bonus: meeting Drew Brees at the concert.

The Frates are an excellent example of persevering despite adversity and we are happy to fight this fight along side of their team.

No white Flags

From Pete:

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October 18, 2013 / tgexp

Morgan Noesen, Hells Canyon

Steve and some his best friends from college (mostly baseball teammates from WSU) went on a Hells Canyon trip last year. Steve had so much fun that he wanted to go again this year, and take a fellow pALS. Ann Marie Byrd from The Catholic Charities of Spokane helped us find a candidate: Morgan Noesen. The trip was more difficult this year for Steve and crew because of his progression in the past year, but the trip turned out to be successful. Because. Awesome aint Easy.

Here are some thoughts from Morgan:

“I cannot begin to tell you how grateful I am for the opportunity to go to Hells Canyon with your crew! Obviously the scenery was awesome and the bass fishing, great. The trips up and down the river were beautiful, intense, and at times, scary (but in a fun way!) The impromptu soakings were the best!

I could go on and on about the many things that made the trip fun, the trip of a lifetime; the monster sturgeon we caught, the great food and drink, the evening thunderstorm we got to watch in the distance, but that really isn’t what I came away from the trip with.

I came away from the trip inspired, changed. I know that sounds cliche, but as a person fairly new to the world of neurological disorders, I have had a hard time wrapping my head around “the new me”, and the concept of what the “new me” will be tomorrow, next week, next year. I had the privilege of spending time with Steve, observing, and taking in his enormous spirit, positivity and perseverance in the face of tremendous adversity, and to see him smile through it all and keep on pushing through. If I can maintain even a fraction of that positive outlook, i’ll be doing well.

Another take away from the trip for me was the incredible people, the friendships Steve has developed over the years, and their dedication to him. Not just him…I felt the care for me, too, even though they had just met me. It would have been very easy to feel like an outsider on a trip of this nature, but these guys weren’t having that. I was welcomed from minute one, and was made to feel a part of the group throughout.

This was a trip of a lifetime for me, a time I will never forget. Thank you for all you do, not just what you have done for me, but for raising awareness, showing your tenacity and making this fight public. No White Flags!”

Morgan

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From Casey Kelly, Hells Canyon Team Leader
It’s funny, I don’t know why it took me until 2007, my first trip, to figure out that Hells Canyon is one of the most special places on Earth. As I’m sure Morgan or anyone else has felt on their first drive into the mouth of the canyon, you have no idea what you’re getting into. You really have no idea how peaceful and yet at the same time dangerous it can be.

I live for taking new friends and family up there just to see how they react to the monster rapids we run through or the quietness that comes at night just laying on the cots under the stars. Or, the excitement of hooking into an 8 foot sturgeon. Its one of those things I spend all winter thinking about. When is summer going to arrive? It cant come soon enough for me to get back out there to see how the river has changed and yet how its stayed the same. What’s around the next corner or next big set of rapids? What big sturgeon will be waiting for us up there or when we will have the next big lightning storm? The river always changing and challenging you, as in life.”

And lastly, from Steve:
“Amongst the variables… there are some constants. Corn. Bass. Tortillas. Guns. Fireball.” -SG

No White Flags

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