Re: CMT Support Group for Kids & families in Long Island NY

[Guest guest]

Hi !

I hope that you are able to find a CMT group that meets in person.

Have you tried asking your pediatric neurologist, or the MDA if

there is a support group in your area?

I wanted the same thing for my now 14 year old son who has a CMT

variant. We found out that he is 1 of 2 children in our doctors

care with CMT and there are no support groups locally for us. The

MDA camp was a fabulous experience for - this year was his

first - and he can't wait to go back again. He had great

opportunities to speak with other children and realize that he is

not alone...

Good luck with your search. Would be happy to share any info about

parenting a child with CMT.... we all learn so much from each other.

[Guest guest]

,

Contact the Neuropathy Association in NYC and see if they have

anymore listings than just this

http://www.neuropathy.org/site/PageServer?pagename=sup_us_newyork

There may be a small group of persons with PN somewhere closer to

you. It wouldn't necessarily be only CMT, but might be a place to

start. Or, if you can't find one, perhaps you may want to start your

own.

~ Gretchen

>

> We live on Long Island, NY and are looking for a CMT group for the

> whole family. Ideally the group would meet in person.

>

> My husband and 5 yr old son both have CMT, but they are affected

very

> differently. I would love my son to know that he is not alone and

> has someone his own age to share his experiences with. It helps to

> meet and know someone who can relate about CMT issues on the same

> level.

>

> My son has a great attitude and through determination can achieve

> anything he wants at this stage. I don't want that to change once

he

> starts Kindergarten and gets exposed to a larger community of

kids.

> Any other advice the group can share about how they have guided

their

> own children would also be appreciated.

>

> I hope this makes sense as I love this site for my husband and me

but

> my two kids would benefit from social interaction :-)

>

> Thanks in advance

>

>