Facebook

We have been inundated since the programme about ANSD ran last week. Thousands of people have visited our little blog and we have had emails, messages of support and calls from all four corners of the globe.

We are humbled and astounded.

As I said to someone yesterday – we don’t have all the answers, but we are happy to point Parents in what is hopefully the right direction. In a world where the decisions you make based on ‘expert’ opinion have such far-reaching consequences, it is so important sometimes just to be able to talk things through with Parents who have been on the same journey, free of professional input or dogma.

That’s why we started our forum last year and why we have put together the Parents network. The latter is already proving invaluable to some new families on the journey. The forum was, sadly, less successful, but I suspect that is down to us.

We also have a Facebook group that we set up last year. We are not trying to detract from any of the other groups and forums that exist, but I can’t help thinking that there is still room for more, else we wouldn’t get so many emails and calls (which, of course, we are always happy to receive). So please do come along and join the group – say hi and ask some questions to get it going – I really hope it works. Do also pass it onto your friends and acquaintances.

By Parents for Parents, that’s my moto….The blog will also update on there from now on.

Parents of Children with ANSD Facebook Group

ANSD

Dear all,

Whilst we are busy getting carried away with the excitement of Wednesday’s ‘See Hear’ programme about ANSD (forgive me in advance for my white shirt – I am told I look like a ‘DAZ ‘ advert) we have been working hard behind the scenes too.

Together with Kai Uus from The University of Manchester (who will appear in the programme) we have been rewriting the page on ANSD and its definition. This is very much still a parent’s point-of-view, but Kai has corrected us on the dreadfully inaccurate parts which, no doubt, made the scientists and doctors cringe.

In any case, do have a look and feel free to comment. We hope you find the content and the updates useful: ANSD (Updated)