Hi Kathy and Karen,
I am glad both of you found this board and the timing couldn't have
been better. So many exciting things are finally happening. There
is a study at Oxford University recently published that I will send
each of you in an email. I also emailed all the vaious parents I
have been in touch with over the years as well as my daughter and
some other teens and adults who have APS 1 so they can join this
forum and we can learn and support one another.
I look forward to hearing from everyone out there, even those of you
who may be lurking so.....
Have a good evening.
Linda

--- In apeced@yahoogroups.com, "kathy" <katee5j@...> wrote:
>
> Hi karen,
> My name is kathy jones and i recieved an email from yourself
today,
> and i just wanted to say welcome,
> i am so sorry to hear about your 3 daughters
> my son is 7 years old and he has apeced, we are from belfast
> n.ireland and through the internet i have met some lovely people
> whom have apeced or whose children have it,
> I just came across this site by chance also last week and i think
it
> is wonderful, Linda is a lovely kind and very thoughtful lady who
> has already put me in contact with a childs mum closer to home in
> ireland, i am also in contact with a lady in london whom has
apeced
> but most of all has brillant knowledge and when ever i am worried
or
> upset etc i can phone her, plus i am in contact with a professor
> whom has apeced and is studying it also, so its good to bluid up a
> network of friends whom you can turn to for advice.
> When my son was first diagnosed i was very afraid and felt very
> alone, i didn't know what apeced was and i wish i had this forum,
> I was only 20 when he was diagnosed and although i had the support
> of my family i need to speak to someone who what i was talking
about.
> i just wanted to let you know if in any way i can help or give
> advice i will, and i will run it pass my new found friends also,
you
> can email anytime and take care katee5j@...
>