NJASAP Brothers and Sisters,

As many of you know, in August of 2023, I was diagnosed with ALS, commonly known as Lou Gehrig's Disease. While I have far outlived my doctor's initial estimates, predictably, my disease has progressed, as has my extremity weakness and paralysis. I still live at home, but my mobility is severely limited. While I can accomplish most self-care tasks, all are difficult, require planning, safety measures, adaptive devices, and frequently, oversight. I have lost the ability to accomplish some personal care tasks and must rely on others' help. I rarely leave home because of concerns with falling and necessary accommodations for my particular handicaps.

Family and friends have stepped in to help. I have been unable to contribute to the household chores for many months. All the additional work is beginning to overwhelm, and we have decided to bring in help starting in January. The Visiting Angels will provide "custodial care" - some cleaning, meal preparations, running of errands, personal care assistance, etc. Initially, the cost is around $350 per week, but as we need more of their services, the costs will rise. None of this is covered by insurance. We also recently learned that our home palliative care nurse is not covered. So, we are asking for some help.

Last year, after I was diagnosed, we had a GoFundMe. The pilot group was very generous, and I am so grateful. It helped us do the renovations needed to make the home functional with my disability. It also allowed us to buy a wheelchair van and several adaptive aids. But there continue to be services and devices we have to buy that are not covered by insurance. So, once again, I am asking my Union Brothers and Sisters to help. If you are able, please consider donating to my ongoing care.

In Unity,

Brian Ward