Arthrogryposis &/or Amyplasia Support & information Group

[Richard Fee]

Dee
I HAVE NEVER HEARD OF THE DISABILITY, BUT THEN THERE ARE MILLIONS OF
THEM. I WILL SPREAD THE WORD. MAYBE SOME ONE KNOWS. NORD IS A GREAT
ORGANIZATION FOR LINKING PEOPLE, SO IS NICHCY. I WILL PASS THIS MESSAGE
ON.
RICHARD W. FEE
Brown wrote:
>
> My grandson, who was born prematurely, on 7/5/97.
> We live in San Jose, California (60 miles) south of San Francisco.
> I have contacted: Parents Helping Parents, California Children's Services,
> March of Dimes, California Birth Defect Center & called several times over
> the last 10 days the National Support Group for Arthrogryposis located in
> Sonora, California.
> This last group has not returned my phone calls--seems to be a home with an
> unclear answering machine message.
> I am a very frustrated grandparent at this stage since everyone I have
> talked to has heard of arthrogryposis syndrone but HAVE NO PRACTICAL
> EXPERIENCE WITH IT. I want to get in touch with PARENTS THAT LIVE WITH A
> CHILD WITH THIS SYNDRONE.
> My grandson will be released from the hospital in 1-2 weeks & will be
> living at our home along with his mother.
> PLEASE HELP ME "HOOK-UP" WITH A SUPPORT GROUP IN OUR AREA SOON!!!.
>
> Thank you for your help in advance.

[Karin Wilson]

In a message dated 97-07-30 14:21:03 EDT, rf...@sonic.net (Richard Fee)
writes:

<< > PLEASE HELP ME "HOOK-UP" WITH A SUPPORT GROUP IN OUR AREA SOON!!!. >>

Hi, I don't think these people are in your area but they will probably be
able to help you. They also either put out or (know who does) a newsletter
for families touched by Arthrogryposis.

Call Nancy at (216) 653-8129 she has more than one child affected by
arthrogryposis and is VERY involved with the issues and support.

Good luck to you,

Karin

[adob...@gmail.com]

hi is there any support group for arthrogryposis multiple congenita syndrome and amyplasia
i have a son his 2 years old
i want to know if there is a new solution or therapy or any way to help children like him

thank you