The past couple of weeks, my Facebook newsfeed has been filled with friends and relatives dumping buckets of ice water over their heads as they participate in the ALS Association’s “Ice Bucket Challenge,” a grassroots and viral approach to raise awareness of a rare disease and to boost fundraising. As you probably know, it has taken on an unexpected momentum of its own and brought tremendous benefits to the effort. I have read that fundraising for ALS is well over ten times ahead of last year. While dollars are vital and important to advance research, awareness is critical, too.
The past couple of weeks, my Facebook newsfeed has been filled with friends and relatives dumping buckets of ice water over their heads as they participate in the ALS Association’s “Ice Bucket Challenge,” a grassroots and viral approach to raise awareness of a rare disease and to boost fundraising. As you probably know, it has taken on an unexpected momentum of its own and brought tremendous benefits to the effort. I have read that fundraising for ALS is well over ten times ahead of last year. While dollars are vital and important to advance research, awareness is critical, too. For example, I am living with a rare condition also, called myelofibrosis. Fortunately, the pharma companies are pouring money into therapies for it, therapies that, if safe and effective, could bring them revenue from other related conditions, as well.
ALS, a terrible and fatal condition that can take away your ability to eat, talk, and move, unfortunately, has no real effective medicines. And I haven’t heard of a magic bullet yet on the horizon. It’s very personal for me as a close friend, Daniel Mulhaney of Mercer Island, Washington (near Seattle), has ALS and, despite a terrific Ice Bucket Challenge attitude, his health is going downhill.
Daniel is very public about it now. And just a few days ago, with help from his daughter, Michaela, he produced his own Ice Bucket Challenge video. Please watch it, below. Here’s what Daniel wrote announcing the video: “For me, the hurdle was less about having ice water dumped on my head (and, WOW, was it ever a shocker!), and more about exposing my physical self to you – I’ve lost so much upper body muscle mass. Having been into fitness all my life, it’s quite a change. But the Daniel that you’ve known is still there, it’s the avatar that I’ve occupied all these years that’s approaching its ‘used by date.’ ”
As you can see, Daniel can no longer speak. The voice you hear is the computer voice of his iPad speaking what Daniel wrote. Daniel is right-handed. But he can no longer move his right hand. So imagine him plunking out the letters of his message to us slowly with his partly functional left hand. I recently sat with Daniel as he patiently did this. And he smiled as the computer voice “spoke” his words to me. Daniel can no longer swallow. He keeps a suction device close at hand. During my visit, like a dental hygienist, I helped operate the device when Daniel signaled it was needed.
Daniel can no longer “eat” like we do. He has a feeding tube that attaches to a little port on his belly. While I was with him, Daniel ate, and he smiled. Around him, his wife tended to chores, and Michaela visited with friends. It was a different experience from just about 6 months before in Barcelona when Daniel led his wife, daughter Michaela, and his college-aged son on a trip to Europe. They stayed with us for several days. Daniel could eat and talk then. But he needed me to sign credit card receipts, because his right hand was almost nonfunctional then. This was part of his “bucket list” trip and included a family reunion in France. Later, he stopped in Boston to explore a clinical trial. He decided not to participate as he didn’t feel this one offered real hope for him, and it would require him to be separated from family and friends.
So, as you can now see, I have seen ALS close up. Even as a two-time cancer survivor, it makes me feel healthy and blessed. My wife, Esther, and I have wanted to do our part. No, we have not dumped ice water on our heads. But we have joined ”Team Daniel” virtually to support a charity walk in Seattle in September. Here’s a link if you would like to support this, too.
The Ice Bucket Challenge has proven to be a bonanza for people researching and affected by an orphan condition. Maybe this is a model to help other little-known groups, as well. Not to be critical, but in this age of pink ribbons and pink baseball bats, awareness – and money – needs to be spread around.
I pray Daniel, who is as alert and sharp as ever, will have many quality days with his family and friends and know that by “speaking out” he is touching us all and hopefully setting the stage for treatments that can prevent suffering in the future.
Rather than sign off my blog my traditional way, here’s the quote Daniel uses as the sign-off for his email updates:
“I promise to smile and laugh and cry and love for every breath that remains in my body.”
– Steve Gleason – #37, Former New Orleans Saints Safety
