re: Who comes up with these lame challenges?

It's not just me. Most of the families I work with (encompassing all neuromuscular diseases and organizations) have the same experience. It's actually harder for the families of children with a NMD. Insurance pays for less, organizations have a budget that is overtaxed by requests that cannot be fulfilled. I'm not trying to be a hard arse either. That's just the truth. Again, not saying it's a bad thing necessarily. I'd just like to see a few people research some direct ways to help than just throwing up video and donating to "resaearch." My kid won't live to see the research, and while it's incredibly important for future patients, he needs a wheelchair ramp. And meds and a PCA so I can work to pay for those things that are not covered. There is very little in the way of help. I have a friend with a daughter who is now in her early 2os. Had the same wheelchair since she was 12. Broken seat, broken motor. It took 11 years to get a new one, 6 years after it was broken. Not just my experience.

Also, just an aside, you know what is desperately needed, never covered by insurance, and expensive as hell? Those blue pads that keep the urine/feces off the sheets when an accident happens overnight. My friend spends ~$350 on blue pads a month. Just blue pads. Y'all want to make a difference? Donate some blue pads. Seriously.