Philanthropic Friday: ALS

Philanthropic Friday: ALS

Last month we went to see a few movies at the theater. Who am I kidding? Every month we see a few movies. It’s a weakness. Not only do I anxiously await the movie itself but I adore watching the previews. Despite the fact that I regularly receive notifications and press releases regarding upcoming movies, sometimes there is one I haven’t heard of and I am actually surprised. It’s awesome. Twice last month, however, I was thrown into a state of emotional unbalance. Not from a movie preview though, from a Microsoft Surface commercial about former NFL player, Steve Gleason.

ALS, officially known as Amyotrophic lateral sclerosis is more commonly referred to as Lou Gehrig’s Disease. It is a neurodegenerative disease that affects nerve cells in the brain and the spinal cord. In layman’s terms, the muscles slowly stop functioning. Muscles that control movement, muscles that control speaking, muscles that control swallowing, muscles that control breathing. For most, it’s a physical ambush leaving the patient’s mind the only thing still working. The most noteworthy person still living with the disease is Professor Stephen Hawking.

What moved me so much about the video was that it brought back a flood of memories about my Uncle Ken. Until I moved to California in my mid-20s, I had lived pretty close to Ken and even worked with him for a time at our family business. He was a very active man who loved music, regularly played softball and volleyball and was filled with dreams of someday owning his own softball clubhouse bar. Scott, Ken and I used to talk about that a lot and despite being my uncle, he was also my friend.

We lost my Uncle Ken to ALS several years ago. His life would have been dramatically different had technology been what it is today. -

Unfortunately, Ken was diagnosed with ALS while I was living in California. We would return home a few times a year but other than that, I didn’t see him much and reports of his updates were never positive. It was a time before the internet of today, before Facebook, before smart phones. Because of the distance and time between visits, I didn’t see the gradual deterioration. For me, he was dramatically different every time I returned home. The first time I noticed anything it was minor. He had difficulty picking up silverware at a family reunion. The last time, I remember one of my aunts telling me that despite his frail body, his brain was just fine; yet I had difficulty even talking to him.

Team Gleason shares how Steve is able to communicate (and inspire) using Microsoft Surface. I’ve seen how technology has changed over the years and this is a great example of how technology can improve our lives – and not just the ability to tweet, text and share our everyday happenings. To truly change the quality of lives like that of Steve and his family. I wish this had been around when Ken was battling this horrible disease because it certainly would have changed his life.

There is no cure for ALS but at least technology is bridging some gaps. For more information, visit the website, the “Team Gleason Experiment” and follow Team Gleason on Twitter or Facebook.


About Nicole

Founder and owner of, Nicole has been involved in social media marketing since 2007. She has partnered with a number of major corporations who utilized her skills to improve their social media outreach and online presence. Nicole has worked closely with brands such as Netflix, Nintendo, Domino's and Disney, has been featured in McDonald's videos as well as Maria Bailey's book "Power Moms". Always a SAHM (stay-at-home-mom) and mother of two amazing daughters, if you can't find Nicole, she is probably somewhere being an advocate for playing board games.

65 comments on «Philanthropic Friday: ALS»

  1. That is so sad. I’m really glad that Microsoft Surface is helping in some way though.

  2. I haven’t heard of ALS before, that sounds really rough! It is awesome that technology allows him to communicate, that is one thing I am thankful for to live in this modern age!!

  3. Thank you for sharing! I haven’t heard of ALS either. I am glad you are getting the word out. That may mean more research funding down the line.

  4. What a sad story. Lou Gehrig’s Disease is a horrible, horrible disease.

  5. Wow that is awesome how the surface is helping people with ALS

  6. People tend to knock technology and our reliance on it, but this is a great reminder of what a valuable tool it can be!

  7. Jennifer B says:

    I have heard of ALS. This is really sad but I am glad to hear that technology can help others with this illness.

  8. I have heard horrible things about this disease. This is just one more reason why I love technology, though. Hopefully it will continue to improve the quality of life for some people!!!

  9. Janice says:

    So sad. But it is encouraging that technology is advancing in so many medical areas. I cannot wait to see what the next 10 years bring.

  10. Dawn Lopez says:

    What a touching story, I hadn’t heard of this before. Love how technology can be the connecting force in a father & so relationship. Sorry to hear about your uncle, but in the same breath happy that with advancements now, things are looking up for the future!

  11. kungphoo says:

    Damn that is some story! The technology that surrounds him and making him communicate with everything and especially his son is simply amazing.

  12. What a touching story. ALS is a devastating process.

  13. Lisa J. Jones says:

    Your Uncle Sounds Like A Wonderful Man I So Agree With You His Life Would Of Been A Lot easier With All The Technology Out There!!

  14. Rebekah says:

    One of my favorite teachers was diagnosed with ALS and passed away. Technology definitely didn’t advance fast enough in his case.

  15. Mickey says:

    I saw a special about him too; he was interviewing Eddie Vedder. It was interesting to see how the technology made communication possible.

  16. Marie says:

    The true purpose of technology. But I was kind of sad when ALS take it’s toll.

  17. Technology is a blessing for so many. My daughter is non-verbal due to autism & she uses a tablet & iPod to help her communicate.

  18. RUSS says:

    I have faith in God and I believe in man’s capabilities to discover new things ( one of them I hope is a cure for this ).

  19. Amanda says:

    This story really broke my heart. Such a horrible disease. I’m glad to see that technology can help ease some aspects of the disease and help keep families connected.

    1. Pam says:

      It is so tragic to see people and their families affected by things like this. I am so thankful that technology has made it easier on people who are suffering from this disease.

  20. Thanks for sharing this story. So glad technology is helping to make life a little easier for people like your uncle.

  21. It’s a good development that technology is catching up on alleviating the struggles of those with ALS.

  22. I can’t even begin to imagine what it must be like for those diagnosed with ALS. I am glad that Microsoft is helping to bridge that gap and maybe one day …. there will be a cure.

  23. I think it’s so wonderful to see technology affecting lives in positive ways. Stories like this inspire us that life goes on, dream big!

  24. I love it when we’re able to see the positive side of technology. I worked in a separate setting classroom for autistic children and a couple parents donated iPads. The teacher said it changed their whole classroom and really been great for the students.

    I’m so sorry about your Uncle Ken, but I’m glad you have so many great memories of him.

  25. Liz Mays says:

    That is just such a devastating disease. I’m glad you’re shining the light on that today.

  26. ALS is such a scary disease, it’s nice to know there are companies out there trying to give them a better quality of life.

  27. This makes me so sad. I’m so sorry for your uncle and hopefully there will be a cure for ASL.

  28. It’s sad that with how far we’ve come regarding technology that there are still thousands of diseases left without a cure. I’m glad there is still options like this out there for those suffering.

  29. It’s all about perspective, and Steve Gleason has a great outlook. I hope they find a cure soon. I have been learning a great deal about assistive technology and how much independence and dignity can be achieved with the right tools.

  30. Sorry to hear about your uncle. Great memories. Thanks for sharing.

  31. ALS is such a devastating disease. This technology is so amazing, and this ad makes me tear up every time.

  32. Rebecca Swenor says:

    This is a terrible disease. Sorry about your uncle. You will always have the memories. I am so glad we have the things for keeping in touch now. My sister is going to her first baby in Aug. and if it were not for technology I would not be able to see her grow, Or talk to her daily.

  33. Dawn says:

    I hate that people have to struggle like this. I am glad that at least he is getting some help with the Surface.

  34. Marina says:

    That’s so sad. That’s why it’s so important to have a strong support system to get through the journey. 🙁

  35. Very sad, it sounds like a nice cause that Microsoft is helping, Thank you for educating us.

  36. Tara says:

    ALS is horrible. And it’s great to bring awareness. And good for Surface for stepping in to help.

  37. This kind of technology is not only applicable to those with ALS but to those afflicted with Autism, Cerebral Palsy to name a few

  38. Thanks for this wonderful article on ALS.
    Looking forward for such more awesome stuff. Keep sharing. Cheers 🙂

  39. Mariana says:

    It’s incredible how far technology has come… that said, I wish more of money was spent on research on finding a cure for ALS and other devastating diseases.

  40. Technology is amazing! The opportunities it offers for communication, not just for people with ASL but with Cerebral Palsy, autism and other communication disabilities, is amazing! The communication is such a basic right and everyone should have a way to communicate!

  41. Pam says:

    It’s great how technology can change the lives of people suffering from diseases like this.

  42. What a difficult disease to live with! So glad that technology is moving forward to help!

  43. Lexie Lane says:

    This makes me so emotional. My father-in-law died with ALS and it was so hard on my husband. I know this would definitely have made things so different for him.

    1. Nicole says:

      Sorry for your loss, Lexie. I was a basket case at the movie when I saw it. Although I cannot imagine how devastating it was/is for you and your family.

  44. What a sad story. I am so sorry! I like how the Microsoft Surface has been able to help.

  45. Ohmy goodness. What a sad story. Lou Gehrig’s Disease is such an awful disease. I love hearing that there is a little hope and will look into this more with the Surface for a friend. Thanks for sharing this.

  46. Debi says:

    Watching someone decline with ALS is heart breaking. I am glad to see there is progress at least in some way.

  47. lloyd says:

    I haven’t heard of ALS but I’m curious to know about that. Thanks for mentioning it.

  48. katherine bartlett says:

    This is so sad that it can happen to people

  49. Candace says:

    My husband has been a fan of guitarist Jason Becker, a 20+ year sufferer/survivor of ALS and he, too had a need for advanced tech to help him communicate, and in doing so, he can still compose masterpieces. It is amazing what some of the advancements can do for ALS patients.

  50. Anne says:

    I’m sorry to hear of your uncle’s struggle with ALS. It seems to me that ALS is one of the most horrific conditions because the person’s mind is still completely functional while their body deteriorates. So sad, but it’s good to know that technology can make a difference in the person’s ability to stay connected with the loved ones and the rest of the world.

    The same is true with autism, as iPads and other tablets are proving to be lifelines in helping autistic people communicate.

  51. Patty says:

    Wow – how cool is that. ALS is an awful disease and to have something that helps a person in such an impactfull way is great. I really hope they find a cure someday.

  52. Terry says:

    What a horrible disease… and so sad that your uncle had it. I didn’t know it as ALS but as Lou Gehrigs Disease.

  53. Mel says:

    This is a really terrible disease. I have a good friend from college that has ALS and it is terrible. I hate seeing the deterioration. I love the positive that is being done for this disease.

  54. I love how powerful and versatile technology can be. My son uses an augmentative communication device at school and the things he can do with it are amazing!

  55. My hope is that one day ALS will be curable. It’s such a difficult disease. I am glad to see technology being used to make lives a little bit easier though – that’s exactly what it should be used for.

  56. mangafox says:

    So sad, but it’s good to know that technology can make a difference in the person’s ability to stay connected with the loved ones and the rest of the world.

  57. Sophie says:

    What a touching story. ALS is a devastating process.

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