This past Friday the official fundraising page for the GCDS Walkathon went live. The walkathon is a unique event for us, as it builds community awareness around our homecoming weekend. Our fundraising is intentionally embedded in the midst of student traditions and celebrations. Our goal is to raise support for, in this year's case, ALS research and care, and to do so in a way that educates the adults and the children in our community. As a school we believe this is the way to make a profound and lasting difference.
I invite you to visit the link below to learn more about the charities we have chosen and the ways we are planning to learn and support.
Link to Country Day Walkathon page
Many of us are familiar with the common description of ALS disease progression. It is dire.
This was the subject of a conversation over a trip to New Orleans this Mardi Gras with Blair Casey, VP of Team Gleason. Blair proposed that advances and adaptive technology have made these numbers increasingly inaccurate. He stated that the ability of people to engage meaningfully in a full life through the use of technology would serve to fuel the personal fight against the disease. I agree, and the exceptionally full life of Steve Gleason is proof of Blair's theory.
The work of Team Gleason and others to facilitate the development and distribution of adaptive technology for people living with ALS is cause for significant hope.
A recent study was published out of Stanford University heralding the results of a phase 1 trial in which a microchip was implanted into the brain of three subjects, including a person living with ALS. The microchip had the ability to sense over 100 discrete motor commands sent from the brain, and it was able to allow the subject to type using their thoughts. The subject had only to imagine their right hand pressing the key on a keyboard, and the chip would send that signal to a computer interface.
As the researchers are quick to point out, there is a long way to go on this technology, but the possibilities are extraordinarily exciting. In this initial study the subject is able to control and communicate through the use of a keyboard, but it does not take much of a stretch of imagination to picture some of the other things that might be possible through this breakthrough. This technology is a game changer.
I am writing this post through the use of Dragon dictation software. A decade ago, my ability to produce text at a reasonable rate, one of my very favorite things to do, would have been next to impossible. I am so hopeful and encouraged when I think of what I, and others living with ALS, will be able to do thanks to technology a decade from now.
In an earlier life I was a reporter. I love telling stories, and I enjoy learning from and sharing the experiences of others. Recently, I have had the humbling experience of having my own story shared. In every case it has been presented thoughtfully and eloquently.
I am grateful for this, and for the opportunity that my story gives me to bring attention to the broader fight for a cure for ALS. That my story, or a piece of it, may be helpful is all I can ask.
Please see below for links:
Greenwich Sentinel – Greenwich International Film Festival
Good Morning America
Greenwich Sentinel – Tri State Trek