Welcome to the John Snyder Benefit Site
Thank you for visiting John Snyder’s benefit website! Perhaps you know John from his work as a parent, teacher and administrator at Austin Montessori School or from his leadership positions in the national and international Montessori community. You may have read some of John’s many Montessori articles or his book Tending the Light. Perhaps you share John’s love of poetry and haiku. Perhaps you know John and Kathy’s son Karl from Karl’s days at Austin Waldorf High School or Carleton College. Whatever brought you here, you are welcome and appreciated.
John was diagnosed with ALS (Lou Gehrig’s Disease) early in 2011. ALS is a progressive, fatal disease of the nervous system that gradually disconnects the muscles of the body from the control centers of the brain, resulting in progressive paralysis and difficulties with swallowing, speech, and breathing. A third of ALS patients die within the first year after diagnosis. The median lifespan after diagnosis is three years, and only 20% are still alive five years after diagnosis. It is, of course, a great blessing that John is still alive, but the reality is that the long-term financial burden to pay for his increasingly intensive care is far greater than his family can afford without the help of friends.
There is currently no effective treatment for ALS, so the focus is on extending the life span and keeping the quality of life as high as possible. Technological advances, the rise of digital media, and the Americans with Disabilities Act have greatly improved the plight of ALS patients, allowing them a measure of independence and channels for communication right up to the latest stages of the disease. However, these devices and systems are expensive, and funding is not always available from the traditional sources. Many ALS patients, including John, require not just one assistive device for each aspect of ALS, but a succession of them, each fitted to the specific stage of the disease.
Because John can no longer work, Kathy is the only “breadwinner” in the family, and in order for her to continue to work, John requires many hours per week of paid homecare, none of which is covered by Medicare or insurance. This is by far the greatest ongoing cost for John’s family at this time. As John’s ALS progresses, he needs more and more care.
So, dear friend, that’s it in a nutshell. John is doing as well as he is today because John, Kathy, and Karl’s many friends have rallied around them, first in a fund-raising benefit event in 2012 and again with a GiveForward fundraiser in 2014-2015 and a benefit concert in 2016. The need is ongoing, and we greatly appreciate any amount you can give.
The Snyder family
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