An Outlier

In January 2011, I was diagnosed with Amyotrophic Lateral Sclerosis (ALS) A disease. Terminal. Approaching 34 years of age, I do not fit the typical ALS criteria as I am ‘too’ young.  An Outlier.

Although there are currently no medical solutions for this disease, I believe my body can be healed. Honesty leads to Grace leads to healing.  Recovery percentages for the ALS population are infinitesimally small. To heal, I must be… An Outlier.

Michel and I spent nearly the past two years trying to become pregnant.   Post diagnosis, we sat together and made the decision that we should still have a child.  We elected to have an In Vitro Fertilization procedure done. The procedure is expensive and has a relatively low success rate. Our child will be unique. An Outlier

I have lived an amazing life.  As much as possible, I want to get that life documented for my child. From the outside my life looks storybook, until the disease part, of course.   I have great friends, a beautiful wife, parents who love me (often in their own dysfunctional way), money (sort of), fame (sort of), success, intelligence. I have been extraordinarily blessed.  An Outlier.

All these amazing elements are parts of me that could become mythical and heroic for my child. That’s fine. Taken alone, these elements are only a myth, not the whole story. I want my child to know me. The entire me.

I am often tormented by life choices. I grew up blending into other peoples families because I was ashamed of my own. I poured my entire soul into athletics because I was shy and embarrassed in other ‘normal’ interaction.  I struggle with envy. I became addicted to my identity as a counter culture athlete. And I struggle with my own contentment as a husband and a friend.  I procrastinate and avoid regular duties that plaster the walls of my life. I hate traffic, cities and technology. Yet I sit here in New Orleans, barely a city, typing away on a phone, computer, camera, stereo…. I love New Orleans! The family, the culture, the people, the restaurants, the history.

An outlier?

I love my life. I get angry and frustrated. I cry. Tears of sadness and tears of joy. I love. I laugh. I Gras.

An outlier…

46 Responses to “An Outlier”

  1. Ailenid Alfonzo
    September 25, 2011 at 7:30 pm #

    Hi
    I don’t follow football so I didn’t know you before the news about ALS. I’m an slp and used to visit an ALS support group back in Puerto Rico. There I met extraordinary people with the disease and loving people who were there for them. There I also learned that 3-5 years is less a rule than I thought. Be realistic but keep living. May God send you fortitude, peace, understanding, strength and health. God bless you and your family.

  2. Jason Francis
    September 25, 2011 at 8:50 pm #

    Steve-

    Please email me at Jfrancis98@gmail.com The inspiration and courage you have brought to my life will never be forgotten!! I would like to get in touch with you.

    Jason Francis

    PS You are an Outlier and You will Prevail my friend!!!

  3. Kevin Knott
    September 25, 2011 at 10:09 pm #

    Steve, got the news today like everybody else. I saw you in Mandeville at the Kyle Turley concert and talked and took photos with you. One thing that will get you and your family is Jesus. I mean that man. I was never a churchaholic and I am learning. What we question now on earth, we will understand the true, big picture soon. If you have opened your heart to him you have NO worries! I am only 35 and don’t know everything but I will pray, and pray some more for you. Just know this, New Orleans LOVES you!!!!

  4. September 26, 2011 at 1:05 am #

    You are amazing. My uncle Nico was diagnosed very young with ALS, around the age of 30 (I was about 10). He was an adventurous, sports loving, Louisiana boy (a saints fan in times when it was not so popular). He was also the only version of a dad I will ever know. What you are doing for your baby is amazing, I would have loved to have videos to go back to hear my uncle’s voice. I raise money and walk every year in the Baton Rouge ALS walk in his memory. I think I will tag on your name to my walker’s badge this year and walk in your honor as well. You are inspirational and my entire family wish only great things for you and great strides in ALS research! Thank you for being brave and putting a face to an illness many just do not know about or understand.

  5. Raymond Slaughter
    September 26, 2011 at 1:29 am #

    I,too, have just been diagnosed with ALS so our prayers and thoughts are with you and your wife as you embark on this new adventure. My sister also died with ALS so we are surrounded with some of the same wonderful researchers and doctors who helped her in her fight. New discoveries are being made with gene mapping and perhaps a cure is on the horizon. We fight and do not give in. My sister lived for ten years after her diagnosis and I can tell you that this diagnosis is a kick in the gut but none of us can give up hope. You can be a wonderful spokesman for ALS and you will find that this is a family that bands together to fight this scourge just like the fight against polio was finally won. Don’t ever,ever give up as you are an inspiration to so many. You will find that the doctors and researchers are the most compassionate and determined that you will ever meet. God bless you and your family and congratulations on that new member of your family.

  6. bill harrison
    September 26, 2011 at 2:50 am #

    Steve,

    Five years ago you brought tears to everyone’s eyes with perhaps the greatest play in NOLA sports history. Today, tears came to my eyes again when news of your illness was released to the public. Please know that everyone in NOLA is praying for you. God be with you.

  7. Melissa Irvin
    September 26, 2011 at 2:57 am #

    Steve, you were and still are one of my favorite Saints players. I loved watching you on the field..always being the first one down on a kick off. I was devastated to hear the news this morning, but if you keep up the fight against this disease like you did on the field, I have no doubt you will be victorious. I had ordered a jersey, years ago, with your number from NFL, but unfortunately their women sizes run a lot smaller than the size. I returned it and didn’t get another….I am very very disappointed in myself now. I do have, however, an autograph from you. Unfortunately it was my son that got to meet you and knowing how much I love you, he got me the autograph. I will cherish it forever!!!! Prayers are a powerful thing and will be sent your way!!!

  8. Joy Najolia
    September 26, 2011 at 3:01 am #

    Steve,

    May God bless you and may we find a cause/cure for this dreaded disease very quickly. Your positive attitude reminds me of my sister, Vadia. She lost her battle to ALS on June 27, 2011 at the tender age of 55. She was a ray of sunshine to everyone, even as she fought her battle with ALS. She had tremendous faith and believed that her journey was for a reason and that God was with her every step of the way. She walked with Jesus daily and never let us forget that! She had no fear, only love and courage. Our family (normally dysfunctional as well) rallied around Vadia and tried to make every day count as a special day for her. She asked us not to cry for her, but to be there to enjoy what time she had left. I did not cry for her — I cried for me — my personal loss as she struggled to hold on as long as she could. She was there on the field with you today (I could just feel it) and she stayed there with our guys to be sure we went home with the “W”.

    I was in that number in 2006 when you blocked that punt against the Dirty Birds and was happy to see you drum up as much excitement tonight with your leadership on the field.

    God bless you, Steve Gleason.

    Sincerely.

  9. Rick Pohlmann
    September 26, 2011 at 3:05 am #

    Like my wife who died from ALS she had a great outlook after being diagnosed. It took her very quickly she started with speak problems in Nov.2010 was diagnosed March 17, 2011 and died June 27, 2011. She was 55 years old and had a great heart very likable and is loved and missed very much. So keep your head up you look like a great person also and I will be praying for you and your family.

  10. Ashley
    September 26, 2011 at 3:09 am #

    MAY GOD BLESS YOU AND YOUR FAMILY….. WHO DAT NATION LOVES YOU…WE ARE PRAYING FOR YOU…. FOREVER IN OUR HEARTS

  11. Brian Walker
    September 26, 2011 at 3:28 am #

    Steve- just wanted to reach out to let you know my family and I are thinking about you and yours brother. You’re an inspiration and a straight up class act. Congratulations on your baby coming soon- kids are the best thing ever! Miss you and praying for you.

    Go Bullpups.
    Go Cougs.

    Take care of yourself brother.
    B Walks

  12. Terrance Adams
    September 26, 2011 at 4:00 am #

    Mr. Gleason I’m believing with you that God can heal you. He is the Author of nature and therefore can defy it. He is able!
    >>>1Peter 2:24<<<

    BTW #37 has always been my favorite football #. Back in 1994 I had a custom jersey made with my name and #37. You wore it well.

  13. Willis
    September 26, 2011 at 10:35 am #

    Steve,
    Please know that there are a lot of people praying for you and your family. I’m praying for healing for you and strength for you and your family in Jesus’ name.
    Romans 8:28, Jeremiah 29:11

    Willis

  14. September 26, 2011 at 1:26 pm #

    http://www.post-gazette.com/healthscience/20010508hlorenzo1.asp
    read especially the last paragraph.

    I work with my dad who is a holistic health care consultant in NO.
    We might have some nutritional information of interest to you.

    Blessings

  15. Eric
    September 26, 2011 at 1:32 pm #

    Steve, you were always one of my favorite Saints. You were the embodiment of the team in 2005 and 2006. You’re the embodiment of New Orleans, too.

    Watching you on television yesterday was an inspiration. Like the city and the team rose up from the brink of extinction, I pray that you will do the same. Keep on fighting and know that a lot of people are rooting for you.

  16. Kelly
    September 26, 2011 at 3:14 pm #

    Many many many prayers are coming your way! My best friend Amber was diagnosed with ALS about 5 years ago at the age of 21. Since her diagnosis she has had a baby and been fighting this terrible disease with all her might! She is a true inspiration to me and the meaning of life as are you! It is apparent that you have made an impact on many people’s lives and will continue to in the future. Keep fighting and praying Steve! God Bless you!!!

  17. Heather Braiwick
    September 26, 2011 at 3:51 pm #

    Steve,

    I am sure that we all witnessed the Saints game yesterday, as it marked the 5 year anniversary of the re-opening of the Superdome. It was the blocked punt that revitalized New Orleans, as many fans shed many tears. You were our hero that day….one moment that will linger on in many people’s hearts and in Saints history forever. For you to be the honorary captain of yesterday’s game and leading our fans in the pregame Who Dat chant….what could be more fitting???? Steve, you are a class act player and person. You also worked with my sister, Tammy Thibodeaux at One Shell Square for Shaw Group. She always said how positive and sweet you are. Please let us know how we can help in your fight and raise awareness. My family sends many prayers to you and your growing family.

    All the best!!!

    Heather Fields Braiwick
    no2ny@yahoo.com

  18. John Heywood
    September 26, 2011 at 4:19 pm #

    Steve,

    Once again your life will be used as an inspiration to others. You have always been so much more than an athlete and blessed well beyond your ability to excel on the football field. My family has been touched by ALS and the memories that last are one that are filled with love and courage. I pray that the journal you are making will be just a small part of the wonderful legacy you impart to your child.

    John Heywood
    heywoodinville@gmail.com

  19. Casey Garrah
    September 26, 2011 at 4:55 pm #

    Steve,
    You’re a rock, an inspiration.

    Like you, I have ALS, just 40 years old, and trying to figure this out.
    I am early stages, but scared as hell for myself and my family.

    The timing of the media attention and the game yesterday had to be fate.
    Thank you for sharing your story so others like myself know we’re not alone.

    I’m happy I found the Team Gleason website.

    You and your family should be proud, you are making a difference, you bring both tears to my eyes, and hope to my heart all at once.

    All the best to you and your family.

    Casey

  20. ruth
    September 26, 2011 at 6:26 pm #

    Saints fans will never forget your courage on the field – not only with your famous blocked punt, but your always exciting special teams play. When I was diagnosed with ovarian cancer several years ago I read Lance Armstrong’s book and adopted his philosophy that the cancer would not define my life and I would never let it win. Do not let ALS define who and what you are. You are still Steve Gleason – husband, soon-to-be Father, son, brother, friend and cherished Saints player. You are defined by your support group, by your giving (who can forget the long hair shaved off for Locks of Love!) and your caring about others. I applaud you and will cheer you on every day. My oncologist once told me that my positive attitude is what got me through a very tough time and I believe him! So remember that it is all about the attitude! Go Team Gleason!!

  21. Jeff Helminger
    September 26, 2011 at 7:16 pm #

    Steve…..

    you were my favorite professional athlete LONG before your blocked punt against Atlanta. and it had nothing to do with your wonderful accomplishments on the field. you have a spirit in you that is rare. your care and compassion for the patients at Children’s Hospital never went unnoticed. your backpack drive after hurricane katrina at McMain H.S. touched thousands. your laid back and personal nature are inspiring. life is measured in those that you influence. and you have and WILL CONTINUE to influence and inspire thousands. congratulations on your beautiful baby. and keep on rockin’ in the free world, my brother.

    Jeff Helminger
    jmhelminger@hotmail.com

    • SG
      September 28, 2011 at 5:24 pm #

      Thanks Jeff. You are a great man. Enjoyed seeing you at the PJ20 showing at Zeitgeist… Y’all go check it out!

  22. Jake
    September 26, 2011 at 7:37 pm #

    Steve-

    I just want you to know that Cougar Nation is behind you 100%. I was a WSU student during the same time period you were at WSU. I thoroughly enjoyed watching you play the game the right way. You have always been one of my favorite Cougs of all time and I enjoyed following your NFL career.

    I was saddened to hear the news of your disease and know that you will take it on full speed. The same way you played football. Good luck to you and your family. You will always be in my thoughts and prayers.

    Jake Stewart

  23. September 26, 2011 at 10:27 pm #

    Hi Steve –

    I would like to help publicize your inspiring life story — I publish a magazine called “Living Well”. It is mailed and distributed to over 21,000 New Orleanians.
    I would love to do an article on you and your foundation.
    In 2007, I was diagnosed with stage 3 Tonsil Cancer. The doctors gave me a 50/50
    chance of making it. Through God’s intervention, I am 100% healed. God has healing plans for you too !! Contact me via e-mail.

  24. Linda Rockefeller
    September 27, 2011 at 12:48 am #

    Steve, I was diagnosed in March of 2010 with ALS, Bulbar Onset. You are my son, Kyle’s favorite Saints player of all time. He’s the one who told me about your diagnosis! You remind me of me. We have ALS, but it definitely does not have us! Love you, my friend! See you at the Walk to Defeat ALS!

  25. Tony
    September 27, 2011 at 3:12 am #

    We have just a couple months ago lost my father to ALS and I have seen first hand what it does. I took care of him for the last nine months of his life and would not wish ALS on my worst enemy. I really hope that you bring as much publicity to ALS as you can, it really needs to get as much recognition as cancer does, so we can hopefully some day beat it and no one else will have to suffer like my father or you or anyone else that is currently going through this. I know here in Northern Nevada and also southern Nevada they do a walk but more still needs to be done to raise awareness.

    Your family and all others that are battling ALS will always be in our prayers.

  26. Kacey Loring
    September 27, 2011 at 3:46 am #

    Steve-

    I have Transverse Myelitis, a neuroimmunilogical disorder. It’s not terminal, but there have been times that I wished I was dead. I have travelled the world, went to college, opened my own business (a little clothing boutique on Magazine St.) I have always been very athletic, playing as many sports as I could in school. When I got out of school I got into yoga. It changed my life! I rode mountain bikes and road bikes. I did the Lance Armstrong Ride for the Roses and went the whole 100 miles. In my 30th year I fell in love for the first time. Then on Christmas Day, without any warning, I woke up from a nap paralyzed from the waist down. Just like that. It’s been 5 yrs 8 mos 1wk. and I still can’t get over it. I read about you in the paper and cried so hard. Thank you for inspiring me. I can’t tell you in this reply, but you understand. I know you do. I want to be like you!!!!! Thank you Steve!!!
    Prayers & much love to you & your family.

    Kacey Loring

    • Mark Musial
      September 29, 2011 at 8:54 pm #

      My wife had TM(couldn’t walk for a month)…Dr. at Mayo Clinic told us 33% get healthy again..33% turn into MS and 33% have it for the rest of their lives….my wife ignored the Doc’s that wanted her to go on MS meds and went totally “natural” with Vit D and phytonutrients and good food…last scan showed her brain lesions had disappeared(Doc was amazed)…keep up the hope…take Vit D3…eat good…are you still paralyzed????

  27. ken
    September 27, 2011 at 3:49 am #

    steve, know that you are in the hearts, prayers and thoughts of thousands. i am in my sixties and have always been blessed with good health and if i could give you a portion of that, i would in a heartbeat. i always admired your determination and courage on the field, where the norm is a behemoth, and you made your mark by doing it your way. just what you to know that you, your lovely wife and soon to be heavenly child will remain in my thoughts and prayers. you have an outlook that is second to none and because of that you make everyone that has contact or knows of you a much better person. take care steve, and may God bless you and your family. you are head and shoulders over anyone who ever walked or ran between the goalposts.

  28. Lis Manley
    September 27, 2011 at 6:24 am #

    Hey Steve, Lis Bertucci here, from GPrep. I’ve just been learning about what’s transpired in the last year and let me say, I am pulling for you! This post really touched me. I never would have known that in high school you were shy or embarassed about anything! I guess I was not open enough back then to see beyond my assumptions about anyone. It looks like you’ve created a fantastic life for yourself, and I will keep on assuming that you will be around to keep on living it!

  29. Chris
    September 27, 2011 at 5:14 pm #

    Hi Steve,

    We were in the same class at Prep but didn’t talk much. I originally saw you as one of the “perfect” popular, cool, talented sports kids–and then we were on the same Search together. Your courage to share things about your life and difficulties stunned me and inspired me to challenge my preconceived ideas about people and let them in. My life was quite different and much better going forward. Every time I close myself off to someone, I make myself open up and give them a chance. It’s amazing what a different that can make in a life. I’ve enjoyed watching you play over the years and I was thrilled for you with all your successes. I have a friend who was diagnosed with ALS 13 years ago and he is doing great. As you know there are treatments available and new research is being done every day. I hope you’ll come to our 20 year high school reunion in 2015 and I’d be honored to shake your hand and thank you in person for what what you’ve done for me, probably without even knowing it :)

    Chris

    • SG
      September 28, 2011 at 5:12 pm #

      Wow.
      Thanks Chris. See you in 2015, if not before. Might as well make a reservation for 2045 while we’re at it…

  30. Liz Truong
    September 27, 2011 at 8:19 pm #

    Steve,

    I grew up in Pullman, WA and you are one of my all-time favorite football players to ever come out of Washington State University. I actually worked for WSU Athletics in High School during your days at WSU and had the pleasure of meeting you several times.

    The past three years as the Executive Director of the Muscular Dystrophy Association (MDA) in Seattle, I have been fighting ALS by helping to fund the best research in the country and providing direct health care services to those living with ALS. ALS has affected my life in ways I can’t even begin to explain; but all I can say is – I will be fighting it the rest of my life or for as long as I need to.

    I saw your announcement and it broke my heart. I couldn’t believe you – someone I grew up watching, one of the local heroes, was just diagnosed with ALS. I’ve been reading through your blogs, website, etc and it continues to give me hope – and I pray for you and your family through this time and what you’re about to face.

    It’s true what they say – ALS is the “nice guy” disease – only those that can handle it, have the strength to see the light and hope of it – are the only ones that end up getting it.

    Stay strong, and I would love to hear from you. MDA provides a world of services for ALS – please check them out.

  31. September 28, 2011 at 9:46 am #

    “Affection is responsible for nine-tenths of whatever solid and durable happiness there is in our lives.” ~ C. S. Lewis

  32. Jeff Scherer
    September 28, 2011 at 3:39 pm #

    Steve
    You are truly an inspiration and I feel privileged to have been your teammate and friend during our brief time together at WSU. Congratulations on the baby. Keep fighting man. You are one of the strongest people I’ve ever known.

  33. Ken Droz
    September 28, 2011 at 6:18 pm #

    Man I loved watching you play, you are still my favorite Cougar football player of all time. Funny, but what I remember most of all was watching you leave the field after your last game in Pullman. I’d been there since 1995 and it was my last game too. Martin Stadium was quiet and just a few fans lingered as the rest went home. I remember feeling grateful, proud, and sad that this chapter would come to a close as soon as you hit that tunnel. Those were great times. You took your time ambling toward the exit, but you didn’t look back. I waited patiently for the chance to thank you at last, and when you finally got close enough I shouted your name as loud as I could. You looked up at me and returned that gesture to everyone who stayed to cheer you one last time. And then you were gone.

    It seemed like the end, but eleven years later, all of that seems like a footnote. You didn’t look back because you weren’t leaving, you were going somewhere. The things you left all changed, and places you went changed too. The game got harder and you seized your opportunity to shine. And here you are again, just how I remember you best. Walking through that tunnel, adapting your game and seizing your opportunity. The game keeps changing, the player stays the same.

    Thanks for inspiring me.

  34. September 28, 2011 at 7:28 pm #

    Hi, do you might have a facebook fan page for your blog?.

  35. Marco
    September 29, 2011 at 9:53 pm #

    Steve,

    Your attitude and faith has become an inspiration to me. I will keep you and your family in my daily prayers.
    My name is Marco, I am 36 years old, I live in Acworth, GA (outside of Atlanta) and I was also diagnosed with ALS on July 13th, 2011 after an 18 month journey to where doctors in Atlanta had no idea what was wrong with me.
    Just wanted to tell you thank you for your website and for the inspiration you provided to me.
    Hopefully I will have the honor to meet you some day.
    God Bless.
    Marco V Guillen
    Acworth, Georgia

  36. Missy Gainer
    October 2, 2011 at 12:54 am #

    Steve, I’ve known your mom and dad since I was a teenager and even babysat you a time or two. I’m so proud of what you have accomplished with your life. I heard about the ALS today and I want you to know that I will be diligently praying for you. I had a very dear friend with ALS and am familiar with the disease. They may not have a cure “yet” but I was healed of cancer this year and the Great Physician can do miracles!

    Missy

  37. Mary Boros
    October 4, 2011 at 2:07 am #

    Steve and Michel,
    I was suppose to go to the game on the 25th of Sept. instead I stayed home for a laid back day with my son. That morning I picked up the paper and started reading your story. I couldn’t put it down. I always loved the Saints but wasn’t familiar with every player and every play. It wasn’t until that Sunday morning that you and your family became a daily thought. I shared your story with my 8 yr. Old son. We soon learned of the ALS walk in Metairie. He was so touched by your story he gave up a years worth of his allowance on your behalf.. He gladly sported “Team Gleason” on his cheek Sunday at the walk. He was so hoping to see you there just so he could let you know that, ” you are going to be ok.”
    Although you may not realize it, your story has touch and taught so many already. I never thought I would see the day my 8 year old would give up his allowance to a stranger, but he did. I thank you for that.
    You have a whole city and a great family behind u. It wasn’t until Sunday when I met Michel that I realized I knew her Uncle Mike. They are wonderful people to have on your team.
    Never question the past or what life has in store for you. You have brought great awareness to this disease that needed more awareness. You did your part my friend. God has a plan for you. Don’t question it. It’s your story, it’s your Destiny!!! Remember, ” your going to be ok. ”
    Always in our thoughts and prayers,
    Mary and Rhett

  38. Carol
    October 5, 2011 at 4:06 am #

    Dear Steve – I admit to never hearing of Steve Gleason until tonight (I am not a football fan). I was directed by someone to your site. I sat for most of the day sad, and somewhat bitter, about the brain cancer fight my brother is living through, Pity for him, my family, and myself filled my heart and my soul. You will never know how much strength you have given me to believe, that for at least tonight, and hopefully in the days to come, I can survive this sickness “bestowed” upon my brother and help him in the days and months to come. I thank you and I thank your beautiful wife, Michel, for helping me feel I too can have the strength needed to continue the fight, Much love and best wishes to you……………

  39. Jennifer
    October 9, 2011 at 6:25 pm #

    Steve and Family,

    Last year my daughter was blessed to have an amazing 5th grade teacher that you might know. I also work at the same school she does. During last year my daughter developed a special spot in her heart for you. You are often in her prayers that she says at night before she goes to bed. Please know that your story has touched many people even before the last few weeks. What you are doing is amazing! I will continue to share your story with my daughter and others. She is a big fan of you and not just because of football. :o ) You have impacted her in a very special way. Thank you for sharing your story. May God bless you and your family.

  40. Karen DiGiacomo
    October 11, 2011 at 8:46 pm #

    Steve Gleason,

    I just wanted to say that I am so impressed with what you have accomplished. I have been sitting here trying to figure out who to contact and how I would go about raising some much need money for research as well as a benefit for my son and you have so much information out there already. Less than 5 weeks ago, my son, Louis, was diagnosed with Amyotrophic Lateral Sclerosis (ALS). When the doctor called, I couldn’t breathe. She had to repeat the diagnosis from the MRI and to make sure I understood, she said, Lou Gehrig’s disease. My son is also an ‘outlier’, at the age of 29. We, Louis, his fiancé, my other three children, my family and I are all devastated. As if this news is not the worst possible sentence one could have imagined, my son and his fiance’ lost their first baby three days after he was diagnosed. I know you may be able to understand the sense of loss they must feel in all of this. We are all so heartbroken over the struggle and changes he has already had to endure. He has yet to even begin his life. The baby was hope for them and I know that they are planning to try again very soon. We want to keep Louis with us forever and always. We are still in shock and overwhelmed from the amount of applications and forms that he has filled out and doctors he has seen. He has at least kept a sense of humor and laughed when I suggested we do a walk in Buffalo, NY as a benefit. He said he could win the chair race for sure. Ha. Louis was a very good lacrosse and football player in high school and still played on a hockey leaguer every week. He played until his legs gave way this summer on the skates.

    Anyway, Louis has a wish for an Alaskan Cruise to do some fishing and I want to do everything possible to make that come true in the next year. Unfortunately, Louis seems to be on a bit faster track than some patients. He has only been symptomatic for approximately 5 months. I am hoping to hear back from you or if you would send an email to Louis, that would be wonderful. I know he would welcome any information of friendship from someone closer to his age. He has declined to attend the support groups, because as an ‘outlier’, he is in a different place. He has yet to live. But he plans to in the next year!

    If you can, please email: kmdigiacomo@yahoo.com. Thanks and god bless you. Karen DiGiacomo

  41. Tim
    October 11, 2011 at 11:31 pm #

    Steve,
    I lost my sister last year to ALS – I know everyone thinks this of their heros, but she was a true “saint” – but not of the football kind (all the way Titans there -lol) , but like you a truly good person – spent most of her life helping others! She never gave up – her only concern was that she would lose her faith in her journey – SHE NEVER DID !!! In the 70 plus years since Lou Gehrig, very little has been done – an orphan disease. I am so sorry for your plight, as only one that has been so touched by it can be (and do remember the prognosis is ALMOST always terminal) BUT it needs to be moved to the forefront of medical research. I applaud your effort in doing that!! If there is anything a poor ole Texas cowboy can do, please do not hesitate to contact me – my thoughts and prayers are with you. Tim Caldwell

  42. October 19, 2011 at 10:25 pm #

    Steve,
    Your mom stayed with us a couple of times since the diagnosis and we were fortunate to get filled in early-on. I have been very inspired, but not surprised, regarding your plans on using this journey to inspire others and bring awareness to the fight to cure this disease. I understandably got a little emotional going through the Team Gleason site, but was holding it together pretty good until I saw the picture of you as a little boy. Life is a vapor, we all have the ability to serve others and sometimes miss our chances. Thanks for always looking for those chances and making a difference.
    I love you buddy.
    Ron Hansen.