a camp in cleveland

Wow, I am surprise to see no members online from
Cleveland, Ohio.....if there anyone reading this, maybe
we can start a group and get to know each other, maybe
a camp for the families then one for just adults, we can
share resources and healthcare info or doctors and support groups or insurance info, and have fun...so please respond if you are interested

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I don't live in C-land but I just wanted to say that maybe if u get enough people u could organize an yearly event & host it. Down in Columbus we have a get together for people with NF2 and its a 3 day weekend with lots of different activities from Dr. Brad Welling the specialist down here who specializes in NF to eating & on Sunday a devotional 4 those who r religious. People from all over come to it.

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You can search for members within a certain distance of you.

I found 218 members within 150 miles of 44114. You can alter the distance if you want...You can also go up to the members tab to do your own search. :)
https://www.inspire.com/groups/neurofibromatosis-network/members/?keyword=& distance=150&postal_code=44114&state=&country=&age_min=&age_max=&submit=Sea rch

You can go to the http://nfnetwork.org/ page and sign up for their mailing list to stay more connected.


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Wow thanks for the ideas.... so it is 2:30am here, so I am not the only one up to wee hours
But thanks, I will follow up on your ideas in the morning, I need to go to bed, I have an appointment
at 8am, concerning nf....I have some pain in my elbow bones, and I am concerned, so I will get back
with everyone tomorrow. Thanks and good night...

P.S. do anyone know or tried any of these joint pain juices the advertise on t.v. do they work with nf?

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I don't live in Cleveland but I am close to Akron and Canton. I would love to talk and get to know you and maybe become friends.

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If you organize something it could be called "Northeast Ohio Gathering"

Here is a link to the one down here in Columbus, Ohio

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Hi Everybody,

I am the Great Steps Walk Program Coordinator at the NF Network and I am actually trying to get a walk started in the the Columbus/Cinncinati/Dayton area right now, but am also open to starting one in the Cleveland area as well if there is enough interest! Anyone or everyone, please email me back at lflo@nfnetwork.org for more info and to let me know if you are interested!


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