Unfortunately things have been taking a turn for the worse in life. My struggles with FTD are getting tougher, with my friends noticing my slow progression more than me. The outside help I was getting that was helping me stay in my apartment and NYC has stopped due to unfortunate luck. My longterm battle to get my long term disability reinstated by Unum is over. The lateness of the appeal due to being misdiagnosed has enabled Unum to get out of there obligation. It's now at the point I can no longer sustain myself and my extremely modest way of life. I've cut back every which way and can't cut back any further.
Now I'm faced with having to leave the area grew up in where I have neighborhood support as well as rare good medical care for FTD from Columbia University Medical Center. Anyone whose been following my blog knows that I'll move and do whatever I have to do to survive, regardless if I'm being told I shouldn't.
My friends, doctors and social workers are totally against me moving. I'm being told over and over it will be a catastrophe from those that know me and FTD well. Uprooting from an area of support to an area with absolutely no support and starting over with FTD I guess is not ideal.
Many friends who follow my work from around the world have been suggesting a fundraiser for a while now. My lifelong friend Marc Turkel (POA), Alice Walton, (Forbes writer, PhD neuroscience, biopsychology) and Joe Becker (filmmaker "West Wing", "It is What it is") have combined there talent to put together a Fundraiser on the fundraising site, "GoFundMe".
There's a short piece written about me, what I'm trying to accomplish and a 3 minute film by Joe Becker.
Since being diagnosed with FTD about 3 years ago after years of misdiagnosis I've dedicated my life to furthering awareness of FTD and have become a strong FTD advocate.
This blog which I started has had over 66,000 visitors.
The documentary film I am making with Joe Becker for AFTD, "Howard's Brain" has about 200 hours filmed.
The world's only support group for FTD sufferers which I created and facilitate, The FTD Patient Support Group has 64 members and is extremely active.
These are a few of the many FTD projects I've immersed myself in.
Though I've slowed down a bit as FTD has progressed, I continue on these and other projects and will for as long as I can.
I hate asking for help, but I need it. If you could please go to the Crowdfund GoFundMe link above and make a generous donation to keep my from being forced out of my apartment, it would be deeply appreciated. For those that can, there is also an option to help me each month. All I'm looking for is a bit of stability in living. To stay in my apartment and continue the work I'm doing that I'm being told is helping people world wide.
Thank you so much for whatever you can do. No matter what, I will keep going for that is what I do.
*If we raise enough fund, the excess will go to a special fund to help FTD Patients that are also alone.
Please share this with as many people as possible.