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 When Allana was diagnosed the Association didn't exist, and the doctors at the hospital,

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 gave us three pages copied out of medical journals with the worst case scenarios

3
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 and said go home basically...you know...just quite devastating. 

4
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 We found that when we had carers looking after him to give us some respite

5
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 they didn't have any idea of what to do...

6
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 You know, you get to see them within the clinic walls for one hour... 

7
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 you know, clinicians don't see what goes on for the other 23 hours of the day.

8
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 And I definitely think the best knowledge is personal knowledge,

9
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 personal experience, and I've had 50 years of that. so... 

10
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 We always find that it's good to have the younger doctors come up and learn

11
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 about our experiences so that they can help with their - the other people that they treat.

12
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 In fact it was the parents who were driving the research...they were saying

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 'Come on guys, we want a big prospective study to tell us what's happening,

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 you know, with out kids as they get older'.

15
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 Professionals come from a whole different perspective, you know. 

16
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 that clinical knowledge and I think sometimes there can be an arrogance that comes with 

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 that knowledge and it's not always easy for a professional to stand back and just listen. 

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 The clinician is approached by a family that's already seen, you know, all that

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 information. So they might know more about things than you, as the health professional.

20
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 Part of the work of forming the association and the work that we were looking at doing was

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 to continue to inform the medical community about kids with Angleman Syndrome.  

22
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 You know, having the ability for, you know, clinicians to come and have a look at the kids

23
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 and have a look at the characteristics - then to be working with, you know, 

24
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 even our own paediatricians and feeding more information back to them about Angelman Syndrome.

25
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 I think it's excellent that doctors become involved with our association.

26
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 They've got a lot to learn from us, as well as us gaining information from them.

27
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 Because that's their only avenue of actual hands-on experiences of people.

28
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 You know, they can read stuff on the internet and textbooks  

29
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 but it's not really going to show them how life is.

30
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 For me in terms of Mike's epilepsy it's felt very much like a partnership 

31
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 in terms of working with it, and I think it's meant

32
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 a better result for Michael as we've done that. 

33
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 Part of the process for us too was having not just the seminars and so on, the conferences, 

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 was the focus groups where as groups of parents we could get together, round a table, 

35
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 and with a clinician or doctor or somebody at that table listening to all of us talk about 

36
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 a particular issue and giving them feedback as to what we think is important

37
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 and what we would like to see more of. 

38
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 And as you said Mary, we're all experts at looking after our children   

39
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 and knowing our children - we're their voice!

40
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 You said to us we need someone who can see my 25 year old and look at,

41
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 you know, how they're walking or how they're functioning.

42
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 So what Robert did in that situation was say 

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 'Ok. well, we need to gather someone to our clinic who has that expertise'. 

44
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 So I think, you know, the clinic has really grown and changed with the parents.  

45
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 It's reassuring to know that there are professionals out there 

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 who are not just on the case but are looking after the...

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 well, the long term care for all Angelmans, not just our kid.