2019 Merry Christmas
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in my own words ---->>>
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Merry Christmas to you! It blows my mind that we're about to close out an entire decade. 2019 has been a banner year and 2020 shows no sign of slowing down. I continue to stay in excellent health. This year will be 14 years since I was diagnosed with ALS. I am fortunate and grateful for the destruction of my motor nerves to have plateaued 8 or 9 years ago. There is very little changed from the 2016 Update I sent out almost 4 years ago. My drooling is worse but my breathing remains without difficulty. I'll take that as a winning hand anytime. I continue to drive my chair and use my computer independently but with increased difficulty. That is what makes my work so exciting right now.
One of the things that will make 2020 exciting is the 10th anniversary of the opening of the Steve Saling ALS Residence and the 4th anniversary of the Dapper McDonald ALS Residence. I have never lived in one place for so long in my whole life so it is a pretty big deal to me. I have lived with around 40 people with ALS (pALS) in those 10 years so I have become somewhat of an expert in living in a long term care facility. I can tell you some nightmare stories about pALS living in traditional for profit nursing homes.
I have been producing a series of videos to educate caregiving staff at long term care facilities on the premise that the caregivers are not without compassion but that they are trained to care for elders, not severely disabled young adults. I hope to dramatically improve the lives of pALS whose lives are like torture at traditional facilities. I have $30k in grant money to have them professionally made. They will be free to watch on YouTube and will definitely be released in 2020 and will be used to train the staff here at the ALS Residences. It is kind of nice to write the manual for how people like me receive care. A LOT of work but nice.
A little over a year ago, I had the very good fortune to meet one of Google's idea guys. He has several teams of techie nerds that spend all day thinking about how to improve the accessibility of the technology they will create. In the past year, the ALS Residence has established a strong working relationship with Google. It has long been a dream of mine to be a research resource for those creating accessible technologies. With Google, we are testing how to communicate more efficiently.
It's not just Google. We also have a working relationship with Microsoft. The largest manufacturer of speaking computers in the world is Tobii-Dynavox and we have a promising lead to become their testing facility. Because we have more pALS living under one roof than anywhere in the world, I've always thought that we would be an ideal resource for tech companies needing beta-testers. We have done just that with local startups like Pison Technologies and Loro, Inc. I will be surprised if 2020 ends without a commercially available product that was tested by the ALS Residences. I am excited about the possibility that the ALS Residences will influence the design of millions of speech generating computers sold globally. On my wish list is connecting Google to the global leading manufacturer of power wheelchairs, Permobil, to create a self-driving wheelchair. There is no reason to create autonomous vehicles for people with fully functioning limbs before people who are utterly dependent on others for mobility. I am very motivated to get this done before my neck gets too weak to drive.
Finally, CEO Berry Berman and I have a vision of converting the other seven houses of 10 people each into ALS Residences and create a global ALS Center of Excellence. There would be respite beds to give families an opportunity to vacation or just relax without worrying about their loved ones. We have a lot of work to do to flesh out the details but the biggest challenge will be establishing the $70M-$100M endowment to cover in perpetuity what Medicaid doesn't. I am hoping to get the attention of a multi-billionaire like Bill Gates who could fund the whole thing with his spare change. I pray 2020 is the year it happens. That is my Christmas wish. I like to dream big. Life is good!!!
One of the things that will make 2020 exciting is the 10th anniversary of the opening of the Steve Saling ALS Residence and the 4th anniversary of the Dapper McDonald ALS Residence. I have never lived in one place for so long in my whole life so it is a pretty big deal to me. I have lived with around 40 people with ALS (pALS) in those 10 years so I have become somewhat of an expert in living in a long term care facility. I can tell you some nightmare stories about pALS living in traditional for profit nursing homes.
I have been producing a series of videos to educate caregiving staff at long term care facilities on the premise that the caregivers are not without compassion but that they are trained to care for elders, not severely disabled young adults. I hope to dramatically improve the lives of pALS whose lives are like torture at traditional facilities. I have $30k in grant money to have them professionally made. They will be free to watch on YouTube and will definitely be released in 2020 and will be used to train the staff here at the ALS Residences. It is kind of nice to write the manual for how people like me receive care. A LOT of work but nice.
A little over a year ago, I had the very good fortune to meet one of Google's idea guys. He has several teams of techie nerds that spend all day thinking about how to improve the accessibility of the technology they will create. In the past year, the ALS Residence has established a strong working relationship with Google. It has long been a dream of mine to be a research resource for those creating accessible technologies. With Google, we are testing how to communicate more efficiently.
It's not just Google. We also have a working relationship with Microsoft. The largest manufacturer of speaking computers in the world is Tobii-Dynavox and we have a promising lead to become their testing facility. Because we have more pALS living under one roof than anywhere in the world, I've always thought that we would be an ideal resource for tech companies needing beta-testers. We have done just that with local startups like Pison Technologies and Loro, Inc. I will be surprised if 2020 ends without a commercially available product that was tested by the ALS Residences. I am excited about the possibility that the ALS Residences will influence the design of millions of speech generating computers sold globally. On my wish list is connecting Google to the global leading manufacturer of power wheelchairs, Permobil, to create a self-driving wheelchair. There is no reason to create autonomous vehicles for people with fully functioning limbs before people who are utterly dependent on others for mobility. I am very motivated to get this done before my neck gets too weak to drive.
Finally, CEO Berry Berman and I have a vision of converting the other seven houses of 10 people each into ALS Residences and create a global ALS Center of Excellence. There would be respite beds to give families an opportunity to vacation or just relax without worrying about their loved ones. We have a lot of work to do to flesh out the details but the biggest challenge will be establishing the $70M-$100M endowment to cover in perpetuity what Medicaid doesn't. I am hoping to get the attention of a multi-billionaire like Bill Gates who could fund the whole thing with his spare change. I pray 2020 is the year it happens. That is my Christmas wish. I like to dream big. Life is good!!!