After my last post I went to Youngstown, Ohio which was kind of a bust. They closed their Children’s Hospital a couple years ago which I didn’t discover until I got there. I was still working off of my original list of 215 Children’s Hospitals that I printed up before I started this mission. I now have an online data base to cross reference with so that doesn’t happen again. After Youngstown I went back in to Pennsylvania where I spent time in Meadville and Erie where I made  a brief side trip to take a peak at Lake Erie where I could see Canada on the other side.


 From Erie I crossed into New York and just seeing this sign was both and exciting. It is hard to believe I have actually made it this far. I am really enjoying New York state so far. Buffalo was a neat city and when I realized that one of my camping options was at the Niagara KOA I rearranged my schedule a bit so that I could take a side trip to the falls for a couple hours the following morning. I am so glad I did. Even though it rained the entire time, which makes some of the pictures a little hard to make out, it was spectacular. I guess the rain kept a lot of people away so the park was not busy at all and it was easy to get around. I’m having a hard time inserting photos so added a second page to my blog with the photo montage so be sure to check that out. Got some pretty spectacular pictures despite the crappy weather.

Anyhow, from there I headed into Rochester and Syracuse. Upstate New York is very beautiful and I have enjoyed my drives inbetween destinations and campgrounds. Schenectady, Albany and Troy were great successes and at one Urgent Care I stopped at I was able to engage 4 nurses and a doctor in conversation about ALD. They were quite impressed with the information since they barely knew anything about ALD or AMN. During my visit they looked up contact information for one of their local news stations for me which turned out to be a sister station of News14 out of Charlotte. When I called they said they would check out my information and the other story and get back to me and since I hear that alot, wasn’t holding my breath. But, lo and behold, I got a call back later that afternoon with an invitation to come to the studio for an interview the following morning.  Here is the link.

This was my first in studio interview and I pretty much nailed it, haha, although I look a little nervous. So now I am camped just outside of Saratoga Springs for the holiday. It rained much of last night and off and on all day today so should be nice and steamy tomorrow when the sun comes back out. I originally was going to meet up with a friend in Woodstock for the weekend but she ended up having to go out of town for business. I had added Kingston to my original itinerary since I would be passing through there enroute to her place, but because of the change deleted those stops and am now going to make it all the way to Maine and then Boston where I will fly out to attend the United Leukodystrophy Foundation’s conference before heading home for a while. BTW, mark your calendars for Stone Breweries Anniversary celebration for charity on August 20th. I need volunteers so if you are available, send me an e-mail at and I’ll put you on my roster.

I hope you all have a very nice 4th of July.


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