The best time at the Conference

[Guest guest]

Hi all,

I just wanted to write and say how much I enjoyed the conference. What a

great job the organisers did....thanks to everyone.

It was my first one and I went on my own from the UK without Neil or

(Charge, 3yrs).

At first it was a weird feeling sitting in a ballroom with 600 other people

who've been struck by the same bolt of lightning as you. It's been quite

emotional, you realise this happened to all these other people too. It's a

bit overwhelming. At times I felt like crying (mostly in a good way!) - plus

there is a lot to take in and hearing other people's stories can take you

back to the early days and remind you what a struggle it can all be/and

continues to be at times. It was real mixed feelings. I felt

sad that Charge had happened to all these good people. And then happy not to

be alone. And then proud at how extra amazing all the Charge kids were. And

also priviledged that I get to participate in this whole other world with

these amazing kids.

It was so cool seeing all these " genetic siblings " of . The older kids

with Charge looked like they were having such a good time....it made me feel

very hopeful that is going to have such a happy outlook on life. With

a lot of the sessions I attended I felt like they were talking specifically

about . The speakers have been really good, lots of useful information

but my To Do list has trebled....as there is so much more we could be

investigating and doing with/for ...with more time/money/effort

required of course.....uh oh!

Another surprise was that I really didn't expect to laugh so much at the

conference. But there was lots of very funny moments and many of the

speakers made me laugh out loud. Brown was hilarious (he must have

been on best behaviour last time I saw him speak in the UK because Princess

Anne was in attendance and it was all very serious) Tim Hartshorne was

another great speaker and when he gave us his Behavioural Phenotype of a

Charge Mother...it was also very funny and lots of us Mum's could indentify

with that one!

This was probably one of the first time I had seen how funny being the

parent of a Charge child could be...there was so much joy and laughter at

the comical aspects of our lives!

Meeting lots of the families from the listserv was great...I can now put

faces to loads of the names and that will be fantastic! It was also great

to be able to meet and say thanks to both Conny and Meg who helped me get

the Charge Diagnosis for when our own geneticist was being so

unhelpful.

Definitely well worth the long flight from England and next time I hope to

bring the rest of the family....I hope everyone else enjoyed it as much as I

did.

is (Mum to , 3yrs UK)