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!
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!
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.
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!
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
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!”
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
Tatum Hernandez reached out to us on behalf of his mother in law, Elsa, who was diagnosed with ALS earlier this year. He and his wife moved Elsa in to live with them and their young kids to take care of her. We were inspired by their love and care. With the money raised for The Gleason Initiative Foundation, we were able to pay for a lift so that Elsa could get in and out of their house. When we told them we were going to pay for lift:
Is there a number where i can call and speak to someone? i am in shock.
Wow, we are so greatful for your generosity!! This is an answered prayer. Elsa had a huge smile on her face, when we told her the great news!! We have so much more to say we’ll do that soon.
I wanted to let you know I received the check and shirts. Again, this has been sooo helpful. Over the last week she has been unable to walk. The elevator has made it so easy to move her out of the house for appointments. Thanks a million, it is such a blessing!
Tatum and Charlene
Elsa is at our house now in Mandeville. She is all set up with hospice. She is still eating well & talking.
The thing that she is most sad about is knowing she will not see her grand kids grow up. They are her pride & joy. Lucas-8, grant-7, Amelia 5. She is making all her wishes known & is comfortable. Elsa is from Honduras, she has lived in Louisiana for over 30 years. Her sisters are coming in, every couple of weeks to visit & help out. Tomorrow she wants to go outside & get some fresh air & watch the leaves fall. Now that we have the lift from TG, that will be possible. Thanks for your support!
Tatum & Charlene
Many thanks to everyone who have donated to The Gleason Initiative Foundation. We are so lucky to be able to help families like the Hernandezes.
We met Carla and Karl at an ALS walk at Zephyr field a couple years ago and liked them instantly.
They reached out about about doing something special for Karl in Las Vegas… And, as we love adventure for pALS, we wanted to help.
So, with the money donated to The Gleason Initiative Foundation, we purchased three tickets to Cirque de Soleil “O” at the Bellagio for Karl, his wife Sandy, and his daughter Carla.
From the Crew:
Dear Steve, Michel, Liz, Lauren and Team Gleason …
Thank you does not suffice!
Dad had an amazing time!
He didn’t know what to expect from ‘O’ and he absolutely loved it! I was slightly confused by it but thoroughly enjoyed it as did Mum.
Awesome aint easy – that was awesome – and definitely didn’t look easy
Thank you from the bottom of our hearts!
We hope to see you all in Belize one day!