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Project Inspire

Jenny G from Peru

Hi Steve and Michel,

I wanted to wish you both a happy birthday month!! This will be another amazing year celebrating life, and there will be many many many more!
Today I completed my first Walk to Defeat ALS in Palm Beach. It was the biggest to date and the walk raised over $258K for the ALS Association. I created a team named ‘Team All In’ in honor of Michel and we raised $2,475!! My goal for next year is double that. It’s small compared to what Team Gleason does but I am so very proud of it!! The amount of support that I received from my friends, family, and coworkers was overwhelming.
Attached are some of the pics from today. We made a new friend, Ron Bessems. He came over when he saw all the Team Gleason shirts and walked with us!! What a small world that he lives within 5 minutes from us!
Tommy couldn’t make the event because of work, but he was there in spirit. He sends all his love and support.
In other wonderful news, Tommy proposed on New Years. I am one very happy and lucky girl 🙂 We are hoping for something small in NOLA sometime this year. You know Steve, I did tell you i’d see you in NOLA for Tommy and I’s wedding when we said goodbye in Peru! 😉
Your health is always in our prayers.
Much Love,
Jenny

 

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This blog page was inspired by Tracey and Hope Elsofon.

Hope Elsofon

Steve,

So I have written and deleted this letter 4 different ways and 6 different times over the past few months. But instead of deleting it a 5th time, I figured I might as well send it. I know that Steve may be far too busy to be able to read individual letters…(Which is an amazing testament to what a difference he is making!!!) But, you never know. Because, I would love for Steve to know the impact he has had on me. And I am hoping that these words from my heart are better than trying to figure out exactly what to say.

I am a 23-year old year medical student at LSU Health and Sciences Center-New Orleans. I have three younger sisters (20, 16, and 12). My family lives in Baton Rouge. In October of 2011, my mom was diagnosed with ALS. As a medical student, it is easy to become very self-absorbed into a stress-filled, sleep-deprived world. However, I very quickly realized that my heart and mind had completely shifted back to my family in Baton Rouge. And medical school (which has been my number one priority and dream since I was three years old) lost its consuming place in my mind. I took a leave of absence from school and moved back to Baton Rouge to be with and support my family.

I have always talked to my mom about everything going on in my life. And, I mean everything. And she has always sensed anything that I may have left out. She has been the one that I could always count on to say the right thing at the right time. The obvious physical challenges that my mom faces and watching the toll that ALS is taking on her body is hard. But what has been hardest is not being able to share the pain that comes with this disease with her. And because I am the oldest child, I feel as though I need to be strong for my little sisters and let them share with me. Therefore, I don’t let them see me vulnerable and end up keeping everything somehow bottled up. I do not say all of this to complain because I am so very blessed. I share this because I want to know the impact that you have had on my life. I know all too well the constant physical exhaustion that comes with this disease. However, I see you and your family put so much effort and energy into raising awareness and fighting for a CURE. And, I know it can’t be easy. I just want you to know how very thankful I am for you and your team.

Coming back to restart my first year in medical school has been really hard. Again, I am not in any way complaining. I am blessed that my family want so desperately for me to pursue my dreams. And they refuse to let the disease “win” and take anything from any of us. But, that doesn’t make the constant cycle of tough thoughts and questions stop. I typically internalize a lot and don’t talk to many people about how I am feeling. However, I have found an outlet for my tears and thoughts and pain. And that outlet is your rebirth statue. I find myself driving there just to sit and “refuel” myself when things get tough. Because it reminds me that if you and my mom can wake up each day with the determination to win and never give up, I can continue to fight as well. You have become a way for me to process through all that ALS brings and conquer them.

Thank you for refusing to surrender and for fighting this disease with such determination and strength. I look so forward to the day that you will see the fruits of your labor and ALS will never affect another family. I am so grateful for your wife and son who give so selflessly for the happiness of others. Thank you for helping me to see the rays of sunshine in such a dark storm.
NO WHITE FLAGS!!!
Hope Elofson

Tracey Elofson

The Game of life they “play” is life-giving for all of us. . .

Last night, Hope and I drove to New Orleans, with her boyfriend, Landon to spend the evening opening the Holiday Season with the lighting of the lights at Harrods. Our inspiration for going was with the hope to see Steve Gleason, Michelle Gleason and Rivers. Hope had made contact with them via email and they had been so engaging, we made the trip. (Yes, for us, things like this are the “up and overs”). While we had a wonderful dinner, outside with the magical Harrod’s snowfall every hour on the hour, (I had lobster mac and cheese!) we watched this family greet and take pictures for over an hour.

I wake this morning still blown away. This family, this young precious family has risen (goose bumps to my toes) way beyond their young years to touch lives with a power most of us will never understand. I never had the privilege to see Steve play on the Saints football field: Basic info I can collect: Number 37. Safety/Special Teamer. Debuted in 2000 for the New Orleans Saints Football Team. Last played 2008 for the New Orleans Saints. Honorable Mention All-Pac-10, 1997. Games played 83. Solo tackles 59. Assisted tackles 6 (NFL.com) Steve is known for his blocked punt in a 2006 game that became a symbol of recovery in New Orleans after Hurricane Katrina.

I know enough about football to I know it is field of fright trains bumping into each other with power that comes from within for a team win. Steve knows something about the “win” and the “tackle” and the “punt” I have no concept of. . .And every day of his life with ALS he fights for the win. Just being with him, you know immediately, he knows team work. He is fighting on a new team now. Steve plays with the same passion and “keep your head in the game” mentality on a new field now, it’s a public field that has open dimensions, well beyond a football field. Just sitting next to him, Steve has all the playing power he had on the field, and he brings it into every effort he makes today. All of the power and press of this young man’s life is still there. It pours from his presence. And again, this young man and his family speak. . .Things are not as they appear. His plays are above the Saints Scoreboard, they are moving life for people he will probably never meet. He has inspired my daughter Hope with understanding, and now having met him and Michelle in person, I am a stronger person today. I cannot understand the dynamic, just chalk it up with deep gratitude to God for an unexpected gift of life, just in a meeting.

Without knowing, he imparts strength in just showing up. (tears). I managed to thank him for all he does for “our fight.” God does have a sense of humor. . .I’m on the same playing field with a gifted #37 Safety and we are passing the ball. I’m glad he is tackling the disease and not me. I’d be squashed like a bug. I can tell you this, I’m deeply grieved for this young family’s struggle and pain. I’ve been praying all night for them. (tears) I’m also deeply, passionately, beyond words, moved with gratitude, that Steve has taken his fight for the win to my playing field too.

Thank you for our new Gleason friends, for engaging us with such genuine warmth and goodness. I don’t know how you do the schedule you keep, but the investment you are making touches my life. It touches far beyond what we can see now with this disease. Our deepest, humble gratitude for your lives. You have made a difference for Hope in your engaging her part of this journey. We love you. tracey

Please visit and support this incredible family. . . www.teamgleason.org

Diana Holmes

We first noticed Steve when we got Saints season tickets in 2003. The kids were 9 and 11 years old at the time. We would always get to the games when the doors opened so we could catch every minute and we loved watching Steve warming up, charging from end zone to end zone.

That Christmas, we got custom Saints jerseys with his name and number and we wore them proudly. People never seemed to know who number 37 was and we loved to tell them!

For the 2004 season, we wore our jerseys to every game and though we were up in the nosebleed section, we cheered Steve on every time he was on the field.

We had to give up our season tickets in 2005 because our schedules were getting too crazy with the kids and the trip from Baton Rouge was more than we could handle. When the Saints decided to play games at LSU, we jumped at the chance to watch our team again in our own backyard!

At the last Saints game in Baton Rouge, my son and I (Alex was 11 then) decided to wait by the team buses after the game to see if we could catch a glimpse of Steve. We were looking all over and couldn’t see him so we thought we missed him.

Imagine my surprise when I get a tap on my shoulder and I turn around and see Steve right behind us, not on the other side of the barricade by the buses with all the other players. Alex was so excited – here was his favorite player standing right in front of him! Unfortunately, we didn’t have a camera with us to capture the moment.

My son was so excited to have been able to meet his favorite player and to get to talk to him that he was a chatterbox the whole way home. To this day, he still remembers that moment with a huge smile.

But here’s the part that makes me smile every time I think about it. Michel was there with him (or at least I think it was her) and she took a picture of us in our jerseys with Steve. It felt like they were almost as excited to see us in our jerseys as we were to see Steve in person! If there’s any chance of getting a copy of that picture, I would love to have it.

Steve has been an inspiration to my kids since the first days we saw him on the Superdome field back in 2003 and he continues to inspire all of us now. My sister was diagnosed with breast cancer in 2011 and in 2012 it spread to her brain. I keep trying to remember “No White Flags” as I support my sister through this time.

And finally, here’s something I have on my Facebook profile:

During the Superbowl pre-game show, they aired a piece about our favorite Saints player, Steve Gleason, who was recently diagnosed with ALS. Peter King asked Gleason if he’s ever thought about how much time he had to live. Gleason’s response: “Yes I have, which is a really good thing to think about as a human being.” “Why?” “Because we all have a timeline. . . . Most of us don’t live like we have a timeline.”

Definitely words to live by.

Diana Holmes

Tommy Scott

Good Morning Steve,

My name is Tommy Scott. I would like to share my story with you / Team Gleason and how it has made a positive impact on my life during a tough time I am experiencing at this current moment.

I am 29 years old, currently live in Slidell, LA and have lived in the New Orleans area my entire life. Like many locals, being a Saints fan is in my blood. I always respected your hard working attitude on the football field, and was fan of yours since you became a Saint. After hearing of your tragic and heartbreaking story, I have followed your progress on the Team Gleason website. I now admire you not only as a football player, but as a man, husband and father. Your outlook on life is a refresher to everyone, and shows how we should never take anything for granted and live life to its fullest.

As to how your story affected me, I found my wife, Amber Scott, unconscious on 5/22/12 when I returned home from work. She was 37 weeks pregnant at the time. I called 911 and we rushed to the hospital. The doctors determined she had a blood clot on her brain due to a ruptured blood vessel. They immediately preformed an emergency c-section and delivered our first child – Adeline Elizabeth Scott. Adeline is healthy and is now 8 weeks old! She is a joy and a miracle.

As for Amber, they removed the blood clot and she survived the night. Two days latter, Amber had a relapse and was sent to West Jefferson Medical Center. It was determined her brain started to swell and a portion of her skull had to be removed to stop the swelling. After 6 weeks in CCU, her brain was back to normal size and her skull was inserted back. Once she left CCU, Amber was able to meet Adeline for the first time which was a special and wonderful moment.

Amber is still at West Jeff in the physical therapy unit and on the road to recovery. We have a long road ahead but the most important aspect to me is Amber and Adeline are alive.

I visit Amber everyday in the hospital. As I approach the GNO bridge going towards the West Bank, I always see your billboard which states “Heroes are born from adversity”. This simple quote has touched me very deeply. As I try to juggle my many roles now, being a first time father, care taker to my wife, and work, this quote gives me motivation and uplifts my spirit. I often think of you and your family as well and the obstacles you all are going through. After seeing you and your families outlook of life despite the curve ball life has given you, I realize I can still have a positive prospective on my life.

I know our situations are different, but I wanted to let you know your story has given me the extra push to be the best person I can be when handed adversity. Thank you and god bless you and your family. You will continue to be in my thoughts and prayers.

Sincerely,

Tommy Scott

Brian Reel
PS – If you would like to follow our story, Amber’s sister and cousins started a facebook page called Amber’s Prayer Team which follows Amber’s progression.

I want to begin by saying thank you.

I have always been a New Orleans Saints fan, through thick and thin. The night you blocked that punt I felt such overwhelming emotions that it’s still hard to put into words. But I am not thanking you for what you did on the field. I am thanking you for what you’ve done since you stepped off.

You have proven yourself to be a man of character, conviction, and courage. Since your days with the Saints, New Orleans has adopted you as one of their own, this city’s son. I could not think of a better representative for this, nor any city. Most people who have so much to be thankful for still look at life and ask why they don’t have more. Meanwhile, you have lived life to the fullest, embraced it, and never asked why you have had to face the adversity you’ve experienced. Through this experience you have shown enormous grace. A grace that none of us would have if we were faced with the challenges you now face. Through this you have been a symbol for all of us who complain when we shouldn’t, for those who see only the world as half glass empty instead of recognizing the beauty which surrounds us everyday.

Well before that punt block I was a fan of yours. I loved your story. I loved that you were a fighter. I loved that you put your heart and soul into not just every game, but every play. I remember the time when you gave the nether region uppercut to the Panthers player and honestly saying, “well if Gleason did it, the other dude must have done something to make him mad.” I said that because of the respect I had, and still have for you. For you carried yourself with dignity and respect both on and off the field. You are a man amongst men.

I have a newborn boy and I plan on one day telling him about you. You are the man who triggered our city’s hope, our will to triumph, to defeat that which has attempted to weaken us. I plan on telling him how throughout your life whenever you’ve found yourself facing adversity, you have not only challenged that adversity, but you have triumphed. I will tell him how you never asked “why me” when the unfair visited you. You’re the type of person we all strive to be. The person who doesn’t pity themselves but instead realizes that they are the only one who has the strength to fight, and the determination to succeed. You are the type of person who doesn’t affliction, but instead opportunity to show others how precious life is, and how we should all be thankful for everyday that we are here.

You have taught us all to not simply settle with the hand that we were dealt. You have shown us that we should never give up. Now, when we get knocked down we will think of one thing which will motivate us, forcing us to get up again…Gleason. Though you initially endeared yourself to the citizens of New Orleans with your play on the field, your name and spirit has transcended that of the football field. People now see you as something much greater than the symbol of a football team. We now see you as a symbol of rebirth. A symbol of courage. A symbol of life.

Again, thank you Steve for standing up in the face of that which many of us couldn’t. For if it wasn’t for you, a lot of us wouldn’t think to reach down deeper inside of ourselves in order to find that extra something. If it wasn’t for you, none of us would look deep down inside and think…Gleason.

I hope this finds you well. God bless you and your family. You are all in our prayers.

Yesterday is but a dream, tomorrow but a vision. But today well lived makes every yesterday a dream of happiness, and every tomorrow a vision of hope. Look well, therefore, to this day.

Thank you,

Brian Reel

Kelly Smith

Now story time…I’m very close to my grandma who was widowed by my grandpa (also very close to him) 3.5 years ago due to cancer. She met someone new…his name is Paul…and married him on the very day I did Ironman this past summer. There was urgency around their wedding date and I didn’t understand it until months later….recently. Paul is a super amazing guy…..so intelligent, so active, so happy, so joyful, so kind, so generous, so in love with my grandma. But all accounts I thought….well WOW how amazing she’s met this guy when she thought truly she’d be the single gal for the rest of her life. Well….as it turns out, Paul had to inform my grandma pretty quick after they started dating that he has Myelodysplastic Syndrome…better known as Pre-Leukemia. They can keep him feeling pretty normal with drugs and regular blood transfusions, but once that stops working….there is only one cure…a bone marrow transplant. Sadly, the dont perform such a risky thing on the elderly because they are considered to be more fragile and this procedure wipes out your entire immunity (think Robin Roberts). Anyways….so when my grandma finally told me about all of this it was because the meds had stopped working and he was going downhill with the only treatment out of reach due to his age. I thought that sounded absolutely stupid, so I did a little reserach and found out that for older patients they do a “mini” bone marrow transplant on people that are healthy and strong despite their age. “Mini” referring to the fact that they do the transplant but leave a small percentage of the old marrow in there to help the immunity. Anyways…I informed that that this treatment existed, so they talked to their doctor and somehow scored an appointment at the Fred Hutchinson Cancer Research center up here in Seattle (they live in Sacramento). All the sudden, Paul got a little hop back in his step….there was hope again! In the meantime, I ordered a couple Team Gleason NO White Flags shirts and send them down to them with an explanation. They were beyond touched. They got the meaning right away. My grandma packed Paul’s suitcase a couple days in advance….Team G shirt right on top. Two days before the trip to Seattle he was feeling unwell and down. Grandma unpacked the shirt and laid it across his chest….she said he perked right up. 🙂 They made it to Seattle and I got to have dinner with them the night before the big appointment. We hugged goodbye and I didn’t let a single bad thought enter my head….of course they were going to tell him that yes, he was the perfect candidate. Well….the next thing I heard from them was a phone call around noon the next day….sobbing and squeaky voice saying “thank you so much….i’m in…i’m accepted….i’m a candidate”. It was the best phone call I’ve ever received. Once they collected themselves they told me about their entire day with big shot doctors and researchers, etc. etc. The best part was this….after a bone marrow extraction for testing, Paul had to lie on his back to keep pressure on it for 15 mins or so. In that time he decided it was a good time to show what gave him strength that day. He unbuttoned his top shirt to reveal his undershirt….a gray tee with greenish/yellow writing….NO WHITE FLAGS. The doctors, nurses, interns….everyone….knew exactly what it was and who Team Gleason and Steve Gleason. “Oh yeahhhhh we know Steve…he’s amazing.” They couldn’t believe it! They knew they were a part of something bigger. Anyhoo…they flew back to Sacramento, both with hope in their hearts and a new motto in their heads and no question whether Paul would go through with the very trying procedure. They get frequent updates from The Hutch about what is going on with his case…currently Paul is on the offcial bone marrow bank list and is waiting for a match…2-4 months on average to find a match they say. In the meantime he continues chemo and blood transfusions when needed…..and he always wears his Team Gleason shirt to his appointments to remind him to be strong and to never give up.

Just thought I would share another example of how you affect people in such a powerful way. Thank you for all you do and for being who you are! Love you guys!!

Kelly

Josh Clifford
Dear Mr. Gleason or whoever is reading this,
>
> You are fighting the same battle my uncle (David Clifford) and many others are fighting or have fought, if you remember you took my uncle Dave to the super bowl this year to watch the patriots and the giants play, I just wanted to say that I know my uncle appreciated that with all of his heart and so do I. He just passed away shortly after your super bowl trip on march 7th 2012. I plan on getting a tattoo in honor of my uncle that says “no white flags” with my uncles birth and death date underneath it. I am 19 years old and just wanted to show my appreciation for all that you have done to inspire those who are sick and the ones affected by this horrible disease.

Much love and respect,

Josh Clifford

Laura, in honor of Leslie Dalton Horn 9/3/1944-1/13/2004
Team Gleason,
It has been nine years since my father passed from ALS. As I usually do this time of year, I begin to replay those final weeks and days in my head. I have been browsing Facebook sites and happened upon yours. Steve is an inspiration and a breath of fresh air even after our time of loss. Alot of the decisions you are making now Steve have resonated in my heart, as I recount his experience. I was/is a daddy’s girl. ( I’m 44) ha. I never gave up, I always prayed for a miracle and believed I would get one. I never gave up. I stayed with my dad the night he passed, we did not know it was time. I just knew he was tired, weary from his battle . I just knew. I prayed, God, I will never give up, but if my daddy is tired, if he doesn’t want to do this anymore, if he wants to go, then let him go. I woke up late that morning and had to rush to leave my patents house so I could get home and get my kids to school, then I got the call. We never gave up, he never gave up. He was just weary from the fight. No White Flags ! Never give up Steve Gleason, you are in my thoughts an prayers ! This is the letter post I wrote about my dad and put on Facebook today ( I’m usually very private, but I thought he deserved some praise). Fight the good fight!
Leslie Dalton Horn 9/3/1944-1/13/2004
What do you say about the man you followed around endlessly as a child. If my daddy was lying under the edge of a car working on it, I was sitting in the grass next to the car handing him the tools. I would anxiously wait for my daddy to get home from work cause I knew he would have gum or sunflower seeds in his front shirt pocket. What do you say about the man who taught you how to ride a bike, how to hit a softball from both sides of the plate, and always made sure you had a bat, a ball and a glove. Who spent endless hours playing ball in the yard with you, bought your first BB gun. He built toys out of materials that he could come up with; like the flying genie. It was a board on a piece of pole similar to a cut power pole and greased at the joint. Me and Lisa would get on each end and we would spin so fast til one of us would fly off the other end. These are the things that molded my childhood and are memories that I hold dear now. It didn’t matter what my daddy was doing; cutting grass, cutting firewood or even siphoning gas out of the old car to use in the lawn mower, it didn’t matter what he was doing. I wanted to be right there. When I was little, in the evenings after I got my bath, Daddy would comb out my tangled wet hair because it didn’t hurt when he did it. I always looked forward to watching TV with Daddy. He would lay in the floor with me and we would watch Tarzan or Planet of the Apes. On Saturday mornings, he would get up at 6 am and watch Bugs Bunny with me. On Sunday nights, we would watch Wild Kingdom and Walt Disney World together.
In the wintertime, most every Saturday morning I looked forward to going with Daddy to cut firewood. He would cut the tree and toss the pieces our way and we would load them on the truck. I loved that. It made me happy because I really felt like I was helping. It didnt really matter what my daddy was doing. I wanted to be right there. And the cool thing was, he always let me. So that’s where I grew up was “right there”, next to my daddy. My daddy called me Peanut. He called me Peanut the rest of his life. He taught me about life, God, caring, sharing, tolerance, intolerance, patience and that love is kind. My daddy was the kindest, bravest, most caring, compassionate, most loving and absolutely the most selfless man I’ve ever known and ever will know. Having Leslie Dalton Horn as a father was a gift, an honor and a privilege . And I miss you every day. Love, Peanut

From Jim and Brad Hicks father:

Hi All, I had my morning workout this AM at our fitness center and as I was walking out a man I didn’t recognize said he really liked my NO WHITE FLAGS T shirt I was wearing. He then explained himself by saying he had a very close friend who had just retired six months ago and soon thereafter was diagnosed with ALS. It turns out the man I was talking to was from Spokane WA, and his father and Steve Gleason’s father were very good friends. He knew of Steve’s problems with ALS and I then told him that Jim and Nadine had just returned from a Team Gleason adventure through the Panama Canal. It truly is remarkable how small the world really is and makes me even more eager to share the NO WHITE FLAGS shirt by wearing it everywhere I can. Love, DAD

Dear Steve,
I wanted to thank you for bringing awareness to the terrible disease ALS. Last January, my 42 year old husband David died from ALS. When he was diagnosed he was young, strong, and full of life. We were in a wonderful place and happy with 3 little boys ages 4 months, 5 and 7 years old.
My 9 year old son Owen is a huge football fan (Giants in our house…sorry) and was watching a news segment recently about you. He turned to me in amazement and said – Mom that’s awesome! Now they will find a cure because everyone will know about ALS!!
Is there anything I can do to help your organization?
Thank you from the Spizuoco Family.
Best Wishes,
Tabitha Spizuoco

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Chelsea Lamping
Steve,

I was fortunate to know you in college – your passion for life was obvious in our youth. I was even lucky enough to cross paths with you a few years later – the food at that breakfast place in New Orleans you showed us was delish! I always admired your approach to life: While I traveled for work, your work supported your surfing habit (thanks to your stories of Costa Rica, we’ve enjoyed those black sand beaches too)! And though a decade has passed, I still seem to happen upon your path in life every few years. In 2009 my husband and I were watching television and saw you championing clean energy on an oil rig in the Gulf. I was proud of your accomplishments as a fellow Coug – making your education count! It was no surprise to me that you’d commit yourself to improving the world. Then again in 2012 I saw your story. Though this chapter of your life is not what you imagined for yourself, you know your affect is still changing lives. I have read your blog and tracked your campaign this year. Inspiring, powerful, unstoppable. And your wife…you are blessed. Michel, you are incredible. There are no words for your courage, and if I might speak for all who know your story – thank you for being Steve’s partner in this valiant fight. I am better for knowing just a glimmer of your love story. We have a 2 year old little girl who has changed our perspective beyond what I imagined. Your story has invigorated our commitment to truly live in each moment and to utilize our gifts to bless others – in hopes she will learn by our example. I pray you share thousands more memory-making moments and that Rivers will grow knowing the magnetism of his father’s smile.
Keep it up, Chelsea (Kellso) Lamping

Amanda Linneman
Hi Steve,
I want to say thank you for creating the No White Flags organization. I know how difficult your struggle is. I think you are an inspiration to a lot of people. My dad was diagnosed in January 2012, with progressive bullbar palsy. In December 2010 he started having difficulties eating and his speech began slur. Between December 2010 and december 2011 he had lost about 70 pounds. He had been to his primary care physician a dozen of times, he saw a neurologist, and had multiple scans, MRIs, X-rays, and various other tests throughout that year. Every doctor he saw and every test he took came back the same…. They told him he was fine, he was having allergy problems and it would clear up, he just needed to eat more. Basically they pushed him away because they didn’t know what was wrong and instead a working with him to find out what was going on they just told him he was fine. In December 2011 he had a few episodes where he woke up unable to breath, both times he went to the ER. At this time he was evaluated by a neurologist. A month later he was diagnosed with progressive bullbar palsy and told he only had a year to live. His neurologist gave him no hope. She said that since there is no treatment he should try to live the best he can. He was devastated, our whole family was. He went to other doctors through the next few months and they all told him the same thing, “The disease progresses fast and we have no treatment options so try and enjoy the time you have.” I think that was the most frustrating part for him, no one wanted to help him fight, no one wanted to give him any hope. He did get a feeding tube in January 2012 but that was the only procedure done. Slowly over the next few months he had more and more difficulty breathing, swallowing his saliva, he was unable to talk, and he was so scared. Unfortunately my dad died on September 24, 2012, only 9 months after his diagnosis.
I am grateful for you and your No White Flags, because like you my dad was a fighter, he never gave up, he didn’t want to die, he was stubborn and fought every day. He wanted help and guidance and hope that he would be able to fight this disease, but he did not get any of that from his doctors. I hope your organization brings awareness to his horrible debilitating disease so people do not have to dinghy alone like my dad did. I miss him so much, but I hope one day there will be a cure and no one else will have to struggle with this disease. I will continue to fight for my dad and fight with you for a cure. THANK YOU, THANK YOU, THANK YOU! For all you are doing to bring awareness to this disease.

Thank you for taking the time to read my letter and hear about my dads struggle. Thank you!
Amanda

Thought he replied to you too.

———- Forwarded message ———-
From: Don Young
Date: Tue, Aug 20, 2013 at 9:23 PM
Subject: Re: Diagnosed 2012, happier than ever!
To: Lauren Bowman

Hello Lauren,

I would be honored to have
Team Gleason share my blog site. How’s
the new ramp working out for Steve?

Thank you for getting back to me.

Don Young

Sent from my iPhone

On Aug 20, 2013, at 1:47 PM, Lauren Bowman wrote:

Hi Don,

Wow, you are incredible. What an inspirational email. Thank you so much for reaching out to Team Gleason. It’s an honor for Steve and all of us to hear that we have impacted your life in any way. Thank you for that. We were wondering if it would be ok if we share your link to your blog on our website? Thanks again for your email, and I look forward to hearing back from you!

No White Flags,

Lauren Bowman
Team Gleason
lauren@teamgleason.org
teamgleason.org

“It’s not going to be easy, but it’s going to be awesome. Awesome Ain’t Easy.” – Steve Gleason

———- Forwarded message ———-
From: teamgleason37
Date: Tue, Aug 20, 2013 at 12:17 PM
Subject: Fwd: Diagnosed 2012, happier than ever!
To: Lauren Bowman

———- Forwarded message ———-
From: Don Young
Date: Mon, Jul 22, 2013 at 1:26 PM
Subject: Diagnosed 2012, happier than ever!
To: “teamgleason37@gmail.com”

Dear Team Gleason,

My name is Don Young and I was diagnosed with ALS in July, 2012. I actually came up with my diagnosis on April 18, 2012 (my birthday). I didn’t tell my family for a month as I came to terms with my “impending death!” In that month I came to realize that my choices were only two, start dying or begin living. I chose the latter. I have been trying to live in the moment ever since and I have enjoyed it immensely. The joy I have experienced from this way of life has made the last twelve months my happiest and also my most productive creatively. In September, I began writing haikus (mostly bad) which has expanded to a more freestyle type of poetry. In April, at the urging of friends, I began a blog about my positive take on my life with ALS. Here is the link to my first post,

http://hopeisdenial.weebly.com/1/post/2013/04/hope-is-denial.html

Shortly after my diagnosis I went to my 30th high school reunion. I spoke to everyone about my diagnosis and my perspective on it. One brief conversation was with a former football teammate of mine, Brent Bieshaar. In January of this year Brent called me out of the blue. He told me that he had been thinking about me since we spoke in July. He told me about this crazy quest he was about to partake in called “Xterra Across America.” He was about to compete in an Xterra off-road triathlon every weekend for 24 weeks which is the entire season. No one has ever come close doing this before, not even the pro’s! He wanted me to be with him in spirit and physically when possible. He also wanted to use his adventure to raise ALS awareness and hopefully funds for The Blazeman Foudation. A foundation set up by the parents of John Blais who, after being diagnosed with ALS, competed in and completed the 2005 Hawaiian Ironman Triathlon.

Check out Brents blog here:

http://www.xterraacrossamerica.com/2013/01/why-blazeman-foundation-some-things-are.html?m=1

In the third week of his adventure I was able to meet up with him in Southern California at the Rengade Xterra event. I wrote a blog post about my experience with Brent that weekend. Here is the attached link:

http://hopeisdenial.weebly.com/1/post/2013/04/the-als-warrior.html

In May and June my family and I took a three week trip to London, Barcelona and several cities in the Mediterranean. This trip was beyond all of our expectations. I don’t believe that prior to my diagnosis that I would’ve appreciated this trip as much as I can at this time of my life.

This trip has motivated me to travel to other destinations that I always thought about. Whether that comes to the fruition I do not know but at least I can dream. Another effect this trip has had on me is that I am now considering an external breathing apparatus and I’m very interested in the diaphragm pacemaker that Steve uses. I still have very good breathing according to my pulmonologist and my voice is very strong. I am wheelchair-bound and I have lost the use of my arms but I do have to use my left hand. I typed this entire email in about an hour with my left thumb on my iphone. I believe that I have a lot to offer the world and I feel that I need to do something but I’m not sure what it is. Many people have told me I should become a speaker but crowds scare the hell out of me. There’s a burning in my heart that tells me I need to do more for my fellow man and my brothers and sisters with ALS.

I just wanted to thank Mr. Gleason for doing what he’s done for others and for motivating me to be a better man. I do have my dark times but people like Steve Gleason, John Blais and Brent Bieshaar help set my head straight. This opens up my creative side and I can write my poetry again. Here is a poem I wrote for my wife, Deanna.

We once embraced so tight
until we could breath no longer
Without a second thought
I would hold you in my grasp
calming your anguish,
giving my love only to you!
My arms now fail me
A simple action stolen from us
When your needs are seen
my limbs are lacking
and my heart bursts at its core
How I miss embracing you
Unable to give you solace
I have become a taker
incapable of this physical gift
Take heart my dear
my mind clutches you tightly
in your times of need
Though I cannot deliver
lung crushing hugs any longer
Lay your head upon my chest
and listen to my heart perform the Aria
That only we both know!
-DLY

A very heartfelt thank you from a fellow ALS Warrior ,

Don #72

20130910-141552.jpg

http://jknowsnola.blogspot.com/2013/09/be-like-steveand-his-friends.html?m=1

Team Gleason,
I had emailed you guys a while back just to tell you about my father Greg that passed away in 2001 from ALS. I wanted to tell you guys that a year and half ago my mothers dad (my grandpa) had been diagnosed with ALS attacking his throat first. As of tuesday morning he had passed away. I had kind of been stressing slightly to the fact that ALS was on both sides of my family only 2 generations away at the farthest. But as of tonight I came home after a long night of work and I turned on espn like I normally and I see a special on Team Gleason going to climb these mountains! This right here has given me realization that I don’t need to worry bout it I just need to keep doing what I am doing and live life to the fullest. I appreciate that you guys are living life to the fullest; and are striving for a cure along with the research of this horrid disease thank you all so so much!!!!

Thank you my dad would appreciate this so much!!!

2 Comments

Leave a Comment
  1. Stephanie Dean / Jun 19 2013 3:38 am

    Hey. My name is Steph. I heard your story unfortunately from the news regarding the Dj’s that made fun at your expense. I don’t want to waste time on that. The really awesome part is that I via the web was able to meet you, your wife and son. ( hopefully not creepy) And for that I’m truly grateful. What am inspiration you are. Thank you for all that you are doing. Bless you all and screw anyone who stands in your way!

  2. Holly Sanchez / Apr 25 2014 9:15 pm

    Hello Steve & Michel,
    I just read your article in Quest magazine . I am very impressed by your attitude and perseverance. I have been living with ALS since 2004. I credit my longevity to eating healthy, having a positive outlook, (which is not easy) and having good caregivers. This journey is only possible, with much support. I am very interested in your foundation. I live in California, in the Palm Springs area. I would love to have available some of the programs and therapies that you mentioned. If you know of any resources, would you please let me know. I look forward to hearing from you.
    Holly Sanchez
    hwsanchez@earthlink.net

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