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!
We got an email from Vicki Jarrell about her friend Cindy Crowe trying to take a trip to Hawaii
“Just wanted to update you on our progress on our “Get Cindy to Hawaii!”
mission. We are good to go except for one thing…We would like to send
a respiratory therapist with Cindy on the trip. The cost is too much for Cindy and family to manage. Any chance that Team Gleason could help with that?”
We love Cindy’s adventurous spirit and wanted to get involved. With the funds raised for The Gleason Initiative Foundation, we were able to help out with her trip!
Delighted to share this tonight… Team Gleason of Steve Gleason, New Orleans Saints, has stepped up to help Cindy accomplish one of her goals. She wanted to go to Hawaii with her family. She and her wonderful husband AL along with her best friend Marlis took steps to make this happen. An expensive trip for any family, with Cindy’s health needs it was challenging. Finally, everything was in place except for ONE critical piece. Cindy needed a Respiratory therapist to go with her on the trip. A ticket to Hawaii was no small thing. That is when Team Gleason stepped up! They work with ALS patients who are LIVING with ALS to create opportunities for adventures. They moved quickly to pay for the therapist’s ticket and help Cindy accomplish one of her goals! HUGE THANKS to TEAM GLEASON and to Steve who is a true champion in every sense of the word! #NO WHITE FLAGS!
Meg Mckenzie wrote to us about her uncle, Russell Clary. It’s pretty obvious why we wanted to do something special for him.
“Hi, I’m Meg McKenzie. I’m a radio show host in Milwaukee, WI. In 2008, my uncle Russell was diagnosed with ALS. For my close-knit family, it was a diagnosis for all of us. When I tell people about my uncle I tell them “he’s fighting ALS and we’re fighting for him.”
And it has been a long, hard journey for Russell, but he has persevered. He serves as a role model and inspiration for other patients fighting the disease, their families and his community. He lives Charlotte, NC, with his beautiful wife Katie. Their two daughters are the apples of my uncle’s eye. They weren’t even teenagers when their dad was diagnosed, but through his and Katie’s love and support, they both attend the University of South Carolina now – Kathryn is a sophomore and Margot is a freshman. I know my uncle would give the world to see them finish school, to see them start their careers and their families; he’d do anything to be by their side through the ups and downs they’re sure to face.
Russell has worked tirelessly to ambassador for The ALS Association’s Jim “Catfish” Hunter Chapter in North Carolina. He’s raised $82,000 for the chapter to date, and I believe he’ll top the $100,000 mark next year! He’s also won the “Largest Team Award” at Charlotte’s Walk to Defeat ALS for four years running, something that I know he’s very proud of. He’s a powerful advocate for patients and gives his all in the effort to fund support services and research. In 2009, he and his daughter traveled to Washington DC, to take part in the ALS Advocacy Convention.
Russell is a well-educated man with degrees from The Citadel and the University of North Carolina. He has a love of learning that never ends. He has a passion for the universe (one of his idols is Steven Hawking) and a passion for the world.
Thank you for taking the time to learn about Russell’s story. My family greatly admires the work that the Team Gleason Foundation does. The impact your team has on patients’ lives is extraordinary. The ALS community is truly blessed by your work.”
After learning about some of his passions, with the money raised for The Gleason Initiative Foundation, we decided on a trip to see his family in Milwaukee and tickets to a Paul McCartney concert. We were excited to help such an awesome guy.
See how it went below:
Thank you and Team Gleason so much for allowing my family and I to travel to Milwaukee and attend the Paul McCartney concert! You created an opportunity for us to spend quality time together in a way that we never could have otherwise.
The logistics for the trip worked out very well. We have not traveled by plane since I have been wheelchair-bound, so the trip to Milwaukee was a little disconcerting at times. However, that was strictly a function of unfamiliarity with the accessibility issue… nothing more could have been done to prepare us for that. Once we got through it the first time, we were pros and knew what to do! The hotel accommodations were excellent, and transportation around town was perfect. I don’t think anything could have been smoother!
The concert was fantastic! I am a true McCartney and Beatles fan, and Sir Paul was fantastic on both fronts. He played for 2 1/2 hours, and I knew every song. Movement around the stadium was easy and the seats were wonderful! I have been to many concerts in my life (including Paul himself about 25 years ago!) and there has been none that could touch this experience… incredible!
The fact that we were able to do all of this in Milwaukee made it all the more special! I am very proud of my niece Meg and all the work she is doing to help fight ALS. It was wonderful to see her, as well as many other family members that live in the area. Milwaukee is where my wife grew up, and she had not been back in more than 25 years. She enjoyed visiting her old stomping ground and sharing with us important places in her past.
I have been following Team Gleason for a while, and have been impressed with the organization and its mission. I was very honored to be selected by Team Gleason to receive such a wonderful gift. It allowed my family to travel together and spend time together without the stress that comes with the planning and financing of such a trip. Those are the intangibles that you have provided, and for which I am eternally grateful.
Please let me know if there is anything I can do for Team Gleason. I am truly indebted to the Team!
Amber Koonce Myers and Greg Groves
Written by: Lauren Bowman, Team Gleason
March 23, 2013 – Preface
My best friend, Amber Koonce Myers from Sulphur, LA, was diagnosed with ALS at age 23 on March 23, 2008. She was a state championship-winning pitcher for Sulphur High School, and always an all around healthy and active person. If you’re reading this, chances are you know someone, or your personal story is in alignment with hers. ALS just seems to strike the healthy and active, doesn’t it?
Throughout the years, Amber has made many friends with other pALS (patients with ALS). Greg Groves is one of her best friends these days. In fact, both of their spouses call the two of them “their other husband/wife”. They chat on Facebook very often, and seem to be a great support system for each other.
Amber sent me a message in early February of this year and said, “would Steve meet Greg and me together?” First of all, I could not contain my excitement about Amber coming to New Orleans. Secondly, keep in mind… Amber has had ALS for 5 years, with a 2-5 year life expectancy, so you can pretty much use your imagination on her progression, and the difficulties that come along with a long drive. (I know I’m being blunt, but she wouldn’t mind.) Lastly, Amber has wanted to meet Steve for a while now, knowing all she had to do was say the word, and I’d make it happen, but she hadn’t. I knew the second she messaged me about wanting to meet now, had more to do with her wanting to do something for her friend Greg, than herself. Just like Amber to do.
Without hesitation I said, “You got it. Let’s make it happen.” And so we did…
March 23, 2013
Amber (along with her mom, Carol and her husband, Eddie) and Greg (along with his wife, Sha, and sister in law Dee) arrived in New Orleans the night before. Much to their surprise, they were staying at the luxurious Windsor Court Hotel in New Orleans. (Many thanks to the Windsor Court staff for making this happen by their hard work and generosity. They were awesome.) Amber and Greg were so excited and both sent me messages full of gratitude as soon as they arrived.
Saturday the fun begins.
Amber and Greg had only met in person once before this trip. They had gone to a doctor’s appointment at a clinic in Houston over a year ago when one of the staff members at the clinic asked Amber to, “Please go outside and talk to this guy, Greg. He seems to be having a hard time.” Amber meets him outside, introduces herself, and says, “You need to leave. Let’s go. I’ll leave too. This place is depressing.” So they left, unfortunately lost touch for a while, but reconnected only a few months ago.
About an hour after I arrived at the hotel, Amber and Greg met each other in person for only the second time ever. These two are closer than ever, and to witness such genuine love in their eyes for each other was a blessing in itself. No words needed to be said.
We went to see the Big Easy Roller Girls play an awesome game of roller derby! It was very exciting, and those girls are incredible! None of us had ever been to a game, so it was a blast. Steve met us there, and that’s when we arranged for all of them to meet. Greg and Amber were nothing but smiles. They chatted, asked questions, made inappropriate and hilarious comments, and shared a still moment in time.
Steve has such a huge impact on so many people. We all know that. His outlook and vision for life – a purposeful life – is like none other. It seems a bit dramatic to say, but Amber met her hero and her inspiration that day. It will forever be one of the best days of my life. To be able to facilitate a moment like that is priceless.
It’s an honor to be a part of Team Gleason for so many reasons, but moments like this sure do stand out. Thanks to everyone that was involved in planning this trip and making it happen.
(Especially thanks to the funds raised for The Gleason Initiative Foundation, which made this trip possible).
From Greg’s Sister-in-law, Dee
We’ve always loved New Orleans. The town is fun, you can legally drink on the street, the food is to die for and you can have the time of your life without spending a million dollars. It’s been our quick destination for a little vacation for years. This year was especially great in that we were headed to meet some folks who we would now forever be connected to.
We’ve been on this journey with ALS for a little over a year now and it has proven to have its fair share of challenges. When my brother-in-law, Greg got diagnosed I thought to myself, this is a lifetime movie type scenario. Stuff like this only happens on TV not in real life, right? I was wrong. The great thing about our New Orleans trip is that we got to connect with others who were battling this same disease. Feeling different or singled-out was no longer our reality. With this trip we walked away with gaining some more family members who would encourage us to keep moving forward in life.
Greg has encouraged my sister and I to get into football for years. We were resistant at first, but we finally came around. One of the first teams I took a liking to once I started watching football was the New Orleans Saints. I have family ties in Louisiana and a few of my closest friends are from New Orleans, so it was only natural that I would gravitate to that team. They definitely have a fan in me. My level of excitement was thru the roof when Greg told me we were going to take a little trip to meet Steve! I was so happy. I didn’t personally know Steve but I knew his story. I knew about the famous kick and I also knew that he and Greg were around the same age and that he was battling ALS too. I thought it would be great for Greg to just have someone else he could relate to. Steve also has a little one and Greg and my sister have a young son that is 8 months. I just knew they could connect.
Greg, being the friendly guy he is also made friends with another person with ALS, Amber! Amber is an awesome person and she and Greg have been able to connect via Facebook. She has been a friend and encourager along the way. Team Gleason arranged for all of us to meet in person while in New Orleans. So we got to meet Amber and her family and hang out with Steve.
Again, it was just nice to experience a fun times with fellow ass-kickers of ALS. We got to see and understand that we are not alone in this. The best part is that each occasion is a chance to build a memory and that is exactly what we did while we visited New Orleans.
Steve’s dad and stepmom have grown very close with the Belotti family. Nick was diagnosed with ALS at an early age, is married to an awesome girl named Stephani, and they just had a baby boy named Nolan! Mike and Jackie helped put on a fundraiser in Spokane and wanted to help the Bellotti family with the funds raised. Their biggest need was a van conversion, so with the funds raised, The Gleason Initiative Foundation was able to help them! Thanks especially to Mike and Jackie Gleason.
From Patti, Nick’s mom:
Dear Michel, Steve, Rivers and Team Gleason,
Thank you so much! That is incredibly generous! You have no idea how much we appreciate the help!
We will be thrilled to have pictures of us taken with the van completed and all of us in our Team Gleason T-shirts. We would need 3 extra large T’s, 1 large, 1 medium and I’m not sure if you have newborn sizes, but if you do, we may have little Nolan in the picture also! Maybe Jackie can come take the photos – or Mike…
It may take 8 weeks for the conversion to be completed, because they are shipping the van to the Braun facility back east. But it’s ready to go and it should ship out this week.
We are so excited – this will give them such freedom! Thank you so much!
Love to you all!
Patti, Nick, Stephani, Robert, Tony & Nolan Lee
Nick painting by mouth
Nick and Stephani and the Fam (including Baby Nolan!) with the modified van.