A Very Successful Family Day

[Guest guest]

Simon,

The clinic would be just terrific. Sure hope that happens, and quickly, for

the

benefit of all of you.

I bet the weekend was a smashing good hit with you at the helm!

Good job!

in Ma. (, 21 yrs)

[Guest guest]

Hi all

I have realised that I haven't told you about the very successful CHARGE

family day we had in London 3 weeks ago. We had this at Sense's family

centre. This has recently been refurbished and contains a hydrotherapy pool,

bubble jacuzzi, art room, sensory room, gym (with trampoline) so was ideal.

There was also a dozen volunteers organised by Sense to help out. We had 16

families attending.

Even though I organised the day I was really happy how well the day went and

it was a huge success, there was a mix of familiar, new and returning faces.

Kirk attended and gave an update on the gene testing here. He has

written a paper on the tests to date. When it is available I will let you

all know. Of as big an interest with the support of the group here is

pursuing funding to open 2 specialist CHARGE clinics in the UK. The funds

are there and CHARGE is just sufficiently rare to fall within the right

criteria.

Actually a couple of months ago there was another family day up north that

was attended by 13 families with one family and me being the only overlap

between the days. This weekend again was very successful. I had a very

pleasant meal with is (from this list) and her family.

This is the first time there has been this activity involving this number of

families in the UK. We are going to build on it next year.

Simon

[Guest guest]

wonderful

>

> Simon,

> The clinic would be just terrific. Sure hope that happens, and quickly,

> for

> the

> benefit of all of you.

> I bet the weekend was a smashing good hit with you at the helm!

> Good job!

>

> in Ma. (, 21 yrs)

>

>

>

[Guest guest]

Hi Simon,

Glad to hear you all had a good time at the London day.

I was sorry we weren't able to make this one.

Did Layla and Ray come with baby ? Layla had said she was hoping to

go. I haven't seen her for a couple of months. Also our Teacher for the VI

mentioned there is another child (aged 1) recently Dx with Charge who also

lives near to us (Bracknell, I think) so if they put me in touch I will make

sure they know about the Family Support group....it's funny that there seems

to have been a recent " cluster " of children in our area all within 3 years.

Also whilst I'm posting - just wanted to say hello to Ian and Cai...loved

the photo and glad you joined the listserv and hope it is proving useful!

is (Mum to )

>

> Hi all

>

> I have realised that I haven't told you about the very successful CHARGE

> family day we had in London 3 weeks ago. We had this at Sense's family

> centre. This has recently been refurbished and contains a hydrotherapy

> pool,

> bubble jacuzzi, art room, sensory room, gym (with trampoline) so was

> ideal.

> There was also a dozen volunteers organised by Sense to help out. We had

> 16

> families attending.

>

> Even though I organised the day I was really happy how well the day went

> and

> it was a huge success, there was a mix of familiar, new and returning

> faces.

> Kirk attended and gave an update on the gene testing here. He has

> written a paper on the tests to date. When it is available I will let you

> all know. Of as big an interest with the support of the group here

> is

> pursuing funding to open 2 specialist CHARGE clinics in the UK. The funds

> are there and CHARGE is just sufficiently rare to fall within the right

> criteria.

>

> Actually a couple of months ago there was another family day up north that

> was attended by 13 families with one family and me being the only overlap

> between the days. This weekend again was very successful. I had a very

> pleasant meal with is (from this list) and her family.

>

> This is the first time there has been this activity involving this number

> of

> families in the UK. We are going to build on it next year.

>

> Simon

>

>

[Guest guest]

Will you have photos in the next newsletter Simon! Sounds like a good time

had by all.

http://www.chargesyndrome.info

>

> Hi Simon,

>

> Glad to hear you all had a good time at the London day.

> I was sorry we weren't able to make this one.

>

> Did Layla and Ray come with baby ? Layla had said she was hoping to

> go. I haven't seen her for a couple of months. Also our Teacher for the VI

> mentioned there is another child (aged 1) recently Dx with Charge who also

> lives near to us (Bracknell, I think) so if they put me in touch I will

> make

> sure they know about the Family Support group....it's funny that there

> seems

> to have been a recent " cluster " of children in our area all within 3

> years.

>

> Also whilst I'm posting - just wanted to say hello to Ian and Cai...loved

> the photo and glad you joined the listserv and hope it is proving useful!

>

> is (Mum to )

>

> On 12/11/06, simon howard

<simonthoward@...<simonthoward%40googlemail.com>>

> wrote:

> >

> > Hi all

> >

> > I have realised that I haven't told you about the very successful CHARGE

> > family day we had in London 3 weeks ago. We had this at Sense's family

> > centre. This has recently been refurbished and contains a hydrotherapy

> > pool,

> > bubble jacuzzi, art room, sensory room, gym (with trampoline) so was

> > ideal.

> > There was also a dozen volunteers organised by Sense to help out. We had

> > 16

> > families attending.

> >

> > Even though I organised the day I was really happy how well the day went

> > and

> > it was a huge success, there was a mix of familiar, new and returning

> > faces.

> > Kirk attended and gave an update on the gene testing here. He has

> > written a paper on the tests to date. When it is available I will let

> you

> > all know. Of as big an interest with the support of the group

> here

> > is

> > pursuing funding to open 2 specialist CHARGE clinics in the UK. The

> funds

> > are there and CHARGE is just sufficiently rare to fall within the right

> > criteria.

> >

> > Actually a couple of months ago there was another family day up north

> that

> > was attended by 13 families with one family and me being the only

> overlap

> > between the days. This weekend again was very successful. I had a very

> > pleasant meal with is (from this list) and her family.

> >

> > This is the first time there has been this activity involving this

> number

> > of

> > families in the UK. We are going to build on it next year.

> >

> > Simon

> >

> >

[Guest guest]

There could be piccies because I have been provided with one from the first

family day and I have a couple of (surprise!) from the London one.

Given I have picked a couple of free DTP software programmes including Quark

of which I have some knowledge I was thinking of changing the design of the

newsletter and in particular when writing in Word my laptop changes the

formatting from our PC and vice versa. This drives me nuts.

Yes so the next issue could have colour and pictures especially as I am off

work for 2 1/2 weeks from Monday. I do the Christmas holidays with the girls

while Flo tends to do the summer.

Simon

[Guest guest]

is

Layla and Ray came along, it is always good to faces to names although it

was getting confusing since there were a good 8 families I had not met

before.

These 'clusters' are interesting because there are quite a number of

families in the group where the elder child has CHARGE and is a similar age

to Jess and the younger child is a similar age to Elly. Bracknell doesn't

ring any bells so if you get to see/speak to them give them my details.

We will see you next I hope as the London day will become annual.

Simon