Justin Page is Living with ALS

$15,160 of $100,000 goal

Raised by 103 people in 15 months
This campaign is for the care and feeding of my friend Justin Page , who I have known for an unbelievable 30 years. About three years ago Justin began to have falls walking up and down steps. Many hospital visits and tests later Justin was officially diagnosed as an ALS patient. He has been fighting it like a champ, including participating in a stem cell trial outside of the U.S. His aggressive treatment and unwillingness to give in, has resulted in an unusually slow progression of the disease. Although he did live in a nursing home for a period, he is currently in an apartment. While he uses a wheelchair or walker, he still stands and has the use of his legs. Some days are better than others, and you can hear that in his voice, which is sometimes strong, and other times obviously stressed. His memory is a bit inconsistent, but not his brilliance or obscene sense of humor.

 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
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As many of you know, I am finally living someplace where I can get better.

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?
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Justin needs some help with paying for phone service. It's been shut off. I don't know how much the bill is because I didn't know this was coming. He's been having crippling nephropathy pain in his legs lately, it's a common symptom of ALS and muscle death. So, not having a communication tool is a problem. He has 911 service (we all do if we have a phone), but can't call/text/email the pharmacy or doctors, etc. If you can help, that would be great.
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As everyone knows, Stephen Hawking died last week. As great a loss as that is, the silver lining is ALS is in the news again. That Hawking lived for 50 years with ALS, and before the new treatments that are being tested today, is a testament to many things -- it also demonstrates that not all ALS is the same and that good care can mean all the difference.

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.
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Hello Friends of Justin and Wonderful Concerned People:

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.

-Rebecca
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Marion R Kee
14 months ago
2
2

Shared!

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$15,160 of $100,000 goal

Raised by 103 people in 15 months
Created February 28, 2017
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$200
Angela O'Malley
1 month ago
1
1

Keep fightin' the good fight, Justin! You're on your way to recovery! ♥

$35
Marion Kee
1 month ago
1
1

Still with you, Justin!

$100
Anonymous
1 month ago
1
1
NI
$250
Noelle Ifshin
2 months ago
1
1

Keep fighting the good fight Justin!

DC
$20
Dorie Chamberlain
4 months ago
1
1

I don't know Justin, but I know others with ALS. You are a wonderful friend, Rebecca.

Marion R Kee
14 months ago
2
2

Shared!

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