ALS Awareness Month. Beyond the Ice Bucket Challenge. 

May is the first ALS Awareness Month since the Ice Bucket Challenge. That silly, organic, viral campaign did more for ALS awareness than years of marketing by any organization could have ever done. Millions of people created videos last summer.  Millions of people talked about ALS and looked up what it is. Over $220 million was donated to ALS charities worldwide. This money didn’t miraculously appear though. Hundreds of thousands of people chose to donate. It was not Internet “slacktivism”.  It was Internet activism at its best: People became aware of an issue and tried to make a difference. My hope is that some of these people will continue to actively support the ALS community. Every 90 minutes someone in the US is still being diagnosed with ALS and someone else is passing away from the disease. With continued, concerted effort, we have the power to change that.

My family did not have the luxury of forgetting about ALS once the videos stopped popping up on Facebook last year. I was diagnosed with ALS in 2013. Shortly after my son James’s first birthday and before his sister Mary Adair’s third birthday, I was told what I thought was a minor hand ailment was a neurodegenerative disease that would progressively rob me of my ability to write, to walk, to speak, and to eventually breathe.  No cure, no treatment, and an average life expectancy of 3 to 5 years. The prognosis is essentially the same today, a year after the Ice Bucket Challenge, as it was for Lou Gehrig when he was diagnosed 75 years ago.

The Ice Bucket Challenge hasn’t slowed my progression. My hands and arms are very weak now. I haven’t buttoned a pair of pants in over a year. Showering and drying off sap all of my energy. Walking is getting more difficult. Yet over the past two years, I have been very lucky that my progression has not been faster. I have seen friends get diagnosed and pass away in the time I have had ALS. Friends, who within months of their diagnosis, can no longer speak or can no longer walk. Since I’ve been diagnosed, James has learned to walk, talk, and get himself dressed (mostly).  He has become a big three-year-old, taking on the world in his rain boots because those are the shoes that are the easiest for him to get on and off by himself. He beams with pride when he actually puts them on the right feet. Mary Adair is now playing soccer, taking ballet lessons, has learned to read, and can fill out the numbers on the check for me when we go out to eat. In many ways, they are still growing up faster than I am progressing.  But when I start to do the math, it just doesn’t add up. For all his development, James is still only three. So in two more years Mary Adair tells me he will be five. I don’t see them carrying me to the beach or driving themselves to school at ages 5 and 6. It doesn’t get easier from here. One summer is not enough to change our future. It will take continued action to change the course of this disease for families like mine.

Already I see what it means for my wife. Because my arms are weak and getting around is enough of a challenge on its own, I can’t help with much around the house.  She is left to do the work.  My wife has excelled at everything she has ever done. This month we will attend her class reunions at the University of Virginia and at Harvard Business School. Going forward, though, the house we live in, the city we live in, the job she takes, will all be dictated by her choice to push our family forward the best she can in the face of this disease. I am in awe of her strength and am humbled by her commitment to our family. I have the greatest partner to live with and to fight this disease with.  But make no mistake, she has ALS just as much as I do.

People who did the ALS Ice Bucket Challenge need to remember that they were helping families. They were trying to change our future. Ice Bucket funds have improved the research landscape.  I am taking part in a Precision Medicine study at the ALS Therapy Development Institute (als.net) that was made possible by a surge in funding last summer. The ALS Association received the lion’s share of donations and has been able to triple their annual research spending, as well as increasing funding for patient services and building relationships with other ALS organization that share a common goal. They must continue to put these funds to work investing with the urgency this situation requires.
The success of the Ice Bucket Challenge, which did not come out of any one organization, but from patients themselves, has reiterated to individuals the kind of impact they can have, and has shown the community what it is capable of when people rally together. For example, Medicare’s arcane reimbursement policies for speech generating devices (SGDs) currently have a drastic impact on patients’ quality of life, restricting their access to technology that allows them to communicate with loved ones and stay connected to the outside world. However, Steve Gleason, one of the most visible and inspirational ALS patients, has been instrumental in getting these policies reversed. Along with the Center for Medicare Advocacy, he has led the community in advocacy efforts that caused the Centers for Medicare and Medicaid Services to rescind some of their most restrictive policies. In addition, the Steve Gleason Act of 2015 would permanently fix these problems and has already been passed by the Senate. Now we need the House to quickly pass the companion bill so that we can put this issue behind us. Please encourage your representative to sign on as a co-sponsor and quickly bring this bill to a vote. Patients are continuing to find their voices and engagement by the broader public is making a significant difference. 

Recently, a small pharmaceutical company tried to utilize an expedited approval mechanism within the FDA to speed patients’ access to their experimental treatment. Given the current lack of treatment options, over 700,000 people signed a patient-led petition urging the FDA to grant Accelerated Approval to the investigational treatment. Without the awareness generated by the Ice Bucket Challenge, I do not believe that would have been possible. While the FDA declined the request, patients and their families had their voices heard and are continuing to work with the FDA and pharmaceutical companies so that expedited pathways are utilized to bring treatments to patients as quickly as possible. HopeNowforALS.org sprung out of this campaign as the ALS community recognized that all agencies, foundations, associations, and researchers, must approach this disease with the urgency needed to truly change the status quo.

In accepting a Webby Award as one of the creators of the Ice Bucket Challenge, my friend Pat Quinn said “Every August until a cure”. Whether it is dumping ice on their heads again, through donations, or through other means, my hope is that the millions of people who gained a glimpse into this community through the Ice Bucket Challenge continue to be engaged. In the past year, we have seen how their generosity and advocacy efforts have impacted the ALS community. Small acts go a long way. Small donations add up. $220 million alone will not cure ALS, but continued efforts from people now aware of the disease will make a difference. Maybe it is time to graduate from ALS Awareness Month to ALS Action Month.

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3 thoughts on “ALS Awareness Month. Beyond the Ice Bucket Challenge. 

  1. Stephen,

    Two years ago my wife Andi and I were with you and your mom and dad when we stormed the Halls of Congress in the name of South Carolina ALS. In the local ALS community, because we have spoken of you to so many times, we might be able to get you elected to Congress. Often wanted to know how you were doing and when we found you again carrying the message to Congress and others you made us so very happy. That Ice Bucket Challenge was an unbelievable gift from God, Awareness that a mere mortal could not have pulled together alone if he tried.

    My progression continues to plod along. When with you last I was using a walker and they loaned me a scooter for the DC visit. I now spend most of my time in my electric wheelchair tho I can still take a few walker assisted steps inside. The wife gets a little panicky when I bounce off a wall getting balance with the walker so I limit it. God bless the caregivers. As you said “they have ALS right along with us”. I’m on the Diaphragm Pacer System and believe that it has helped keep my lung function at a decent level. My energy level sucks (college word) at times so it must be managed very carefully if I want to have a somewhat normal life activity. The new normal for us. My voice is close to totally gone however I can still eat everything so I still feel very blessed. Arms are weak but can still throw them around but with very little strength. ALS has brought us to see the really important things in life and the so many fantastic people we now interact with.

    So Stephen the very best to you and your family and thank you for taking on the good fight.

    Don & Andi Brooks Murrells Inlet, SC

    >

    • Great to hear from you Don.
      Maybe Gov. Haley will appoint me to Sen. Graham’s Senate seat if he is elected president!
      All the best to you and Andi.

    • Don and Andi, I just came across your kind comments. I had wondered how you were faring. Mike and I continue to follow after Stephen in his quest. We went to the two rallies here in DC to try to move the FDA. To my surprise the FDA is actually having on going meetings with the ALS folk. These young warriors are amazing!
      We just spent a great week on Seabrook Island, SC with our children and grandchildren. 14 of us in one big house. These gatherings are so very special. We took the occasion to pour ice on our heads. Stephen was still able to get to the beach on his own.
      I wish you both the best. Mary Finger

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