Hello there my little friends.
About a year and a half ago my friend Nathan Fritz helped along by Taylor Hoedemaker started a Go Fund Me page to help me in my exciting ALS adventure. The response was overwhelming and enabled us to navigate the new reality without freaking out about money. Of course the best part of the whole thing were the notes people wrote conveying their appreciation for me and my work. This was so gratifying to know I really had been a force for good in my 20 years of teaching.
To update my situation with an elaborate military metaphor: I am losing battles but the war is not over. Headquarters is still intact and morale is strong. The next stage of the fight will however require us to marshall every available resource. It is imperative that we keep the supply lines open to sustain the troops.
To extend my time on the planet I have decided to get a tracheostomy. That will allow a machine to help me breathe (and I will be one step closer to my dream of becoming Darth Vader). While this will grant me an extension it will also be expensive due to the round the clock care required (estimated annual cost is $100,000 or more ). You see I have become very high maintenance.
This puts me in the uncomfortable position of having to reach out once again to you all. But my heroic partner Hallie and I have come to realize that this effort will truly require all hands on deck and there's no time to be shy.
I would also like to take this opportunity to share my music with anyone who is interested. In case you didn't know I make music under the name "Dangerfield Newby" (history reference). Last spring, right before I lost the ability to sing and play (some would say I never had it) some friends and I got together and recorded an album that I'm quite proud of. You can find it online on Bandcamp: "Dangerfield Newby, Music In Our Heads" or I'd love to hook you up with an actual CD complete with artwork and notes. Just e-mail me your address at:
It's the least I can do. While you're at it tell me whats going on with you, I'd love to hear it.
Let us move forward together,
- Paige Johnson
- Bonnie Kosko
- Alex Candoo
- Randy Litzenberger
Organizer and beneficiary
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