Want to start support group in upstate new york

[sky16cb]

So we went for her 1 month app with the doc's. and meet a family from my area that just ws told there son had cranio. All these feelings rushed back to me when I found out about Autumn. She told me she never heard of cranio and dosen't know where to start.
There is alot of family out there that have no clue what cranio is. And I'm thinking about starting a support group in my area for cranio family. So they can talk and ease there minds on there up coming surgery and after.
I just want to know if any of you have doen this where you live. and if so did work out for you. Just need a few tips to get my feet in the door. I think I might have found a place to hold the meetings.
Just want to pick your guys brains. Any tips let me know.
Thank you
cat

[jenniferann75]

I don't really have any advice but wanted to tell you what a great idea this is! I look forward to seeing what ideas everyone might have.

[btkan5]

I am in the process of working with some connections I have in Cincinnati at Childrens, in starting a parent to parent program, where parents can be put in contact with other parents at the hospital who have or are going through the same situations....surgeries, testing, therapies, etc. Our doctor put us in contact with a family in Indianapolis, who had been through the surgery twice, once with each of their sons. This other mom and I talked many times leading up to Nolan's surgery. It was such a comfort for us to have them leading into surgery day. We still keep in contact.

I think that other parents could benefit from this sort of resource. I know like many of you, having been through this extremely difficult time, I feel the want and need to give back and make a difference.

Tiffany

[marisajo]

Tiffany...count me in for anything I can do to help...we're In Cinci (west-siders) with care @ Children's as well. I was always surprised that the hospitals didn't have something like this in place.

[btkan5]

Marisa...did Crone perform your son's surgery too?

[sky16cb]

I have tried to talk to people and places to start something. But haven't gotten any where's yet. We talked to a family before Autumn surgery and it really did help. I going to see the doc's next week and I want to bring this up.
Wish me luck..

[marisajo]

No, our ns was Dr Myseros (no longer @ Children's.) We're now under the care of Dr Bierbrauer, though we mostly see the ps, Dr Gordon and opthamologist Dr West these days.