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July 11, 2013 / tgexp

Amber Koonce and Greg Groves, NOLA

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.

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One Comment

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  1. Zeke Stewart / Oct 6 2013 5:02 pm

    I am a 53yr old nurse,husband,father,veteran who loves football,the Bears)..I have watched the documentary called marihuana miracle cure And there is a woman on that documentary who is 63,talks and has slowed down the effects of ALS with canabis oil and inhalation of vaporized marihuana..I have researched hemp oil due to a family friend who has brain cancer.I would strongly suggest that you try this as the oil allows for greater signal transmission from brain to nerve cells..I ask you to watch the documentary and decide for yourself this is the course to follow..You guys are in my prayers..Zeke

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