Justin Page is Living with ALS
Justin receives Social Security Disability and Medicare , which are wonderful programs, but let’s say modest. From month-to-month finances are a struggle, which is an added struggle no one with ALS needs. In addition, the stem cell trial he participated in was “FDA unapproved,” though approved in the jurisdiction where it occurred. Simply, the U.S. does not necessarily recognize the medical research in other countries, so although his American doctors are very happy with the results, the “system” is not thrilled about his participation, and that causes hiccups in his benefits at times.
To help in the small way I can, I have created this campaign, which hopefully will bring in some funds for Justin’s continuing needs. If you are able, please contribute. Anything and everything will be greatly appreciated.
To know Justin Page is to love him, and sometimes want to throttle him. He’s a lunatic, and a genius, and infuriating, and my best friend. Give generously, and often.
First diagnosis of ALS
Before the wheelchair
In the wheelchair but still living, w/daughter Carina
Not as cleaned up - the way I know him
Me , bad webcam, but real
Someone sweat a lot the "large stuff" for me.
I'm asking for your help with some small stuff. A few hundred dollars for things like rugs, telephone service, blinds on the window (give the gift of sleep) and co-pays.
This is a (hopefully) last go around on GoFundMe.
If you can help me make it to this month's SS check, maybe a get together isn't far away?
Read more about Hawking and ALS here (and watch the very interesting videos to get a sense of what it is REALLY like): https://www.cnn.com/2018/03/14/health/als-amyotrophic-lateral-sclerosis-lou-gehrigs-disease-explainer/
Unfortunately for the non-rich and famous, good care is hard to get. We buy our medical care and it is very expensive (in case you haven't noticed). Also, a disability such as this is expensive day-to-day. Getting to doctor appointments, food, supplies, and every little thing seems to cost more for people who have less.
If you can give a bit, you are a hero. Yes, I said, a hero.
It's update time. There is good and not so good news. The good news is Justin will be moving, hopefully in March, to a place where he can receive much higher quality and consistent medical services. The bad news is he needs them.
At the most recent visit to Mount Sinai the neurologists said that although he has "atypical" ALS and that it has been progressing slower than most, it's still progressing. He's beginning to have serious breathing issues and eventually will need surgical breathing intervention. Hopefully more aggressive physical therapy will keep that at bay for a while. There is plenty more medical information, but that's about all I can handle right now.
This page is for asking for financial help, and that's what I am here to do. His SSDI isn't covering all his expenses and he will need some moving money. Basically, it's a long-term, chronic, and debilitating illness and the need does not go away, it only gets more pressing.
I've been doing this almost a year and there has been tremendous generosity and kindness. It seems like the asking should end, but as long as he's kicking, there is still a need. If you are able, please contribute now.
Justin sends his thanks and love. So do I.