Nurse Karen came today for a couple of hours with Nurse Julie and then she stayed until 9 PM on her own. She and Gene held down the fort while I went to 99 and met with Heidi Roy from Families of SMA (FSMA).
Heidi is the fundraising coordinator for the New England area. We're hoping to get a Walk N Roll going in Burlington. So she came up this way to check out the area and chat about getting stated. We were supposed to meet with Cari K. but she ended up not being able to make it. I think Heidi said there are only about 5 families registered in Vermont with FSMA. There are several angel families in the area and then a couple of families with type 3 kids and a type 2 family as well. I now there have got to be more--but not that I'm aware of. I've always made sure to let our pediatrician and specialists know that they can give my name out to anyone that is diagnosed. I've only had two calls over the years.
Anyway, we met and chatted for about two hours. She was very interested in hearing our story and learning more about how SMA affects families. I could tell, just from this one meeting, that she is truly dedicated to raising awareness about SMA and finding a cure. I didn't even pay much attention to the food, but I think it was good, lol.
We're hoping to do a Walk N Roll at Oakledge Park in Burlington. It's a perfect spot and many fundraising walks and runs take place there so it would be easy (well, as easy as starting a walk could be) to figure out the best way to set things up. Heidi was able to check it out a bit before our dinner and she was pretty excited about how beautiful it is there --and there's also the accessible tree house.
So, next time we hope to meet with a couple of more families and do some more planning. Looking forward to spending some time with local SMA families.
I got home in time for bed. Thank goodness I did or Colin would have had a fit!! I guess Karen and Gene did okay entertaining while I was gone :)
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