Over the past four years of blogging, we have been contacted by over 100 parents and families who are finding their way through the minefield of information and disinformation about ANSD.
We do our best to keep up and to help.
Alice’s Ears has had over 30,000 unique visitors and currently has around 100 unique visitors a day. Blimey!
In the UK at least, it can feel very lonely. We try to offer advice and comfort where we can, but what, at the end of the day, do we know? We can only share our own story (of which more will appear in the BBC programme on 24th October (tbc)). We also do our best to help the ‘scientists’ to further the understanding, diagnosis of and prognosis for children with ANSD.
With all this in mind, I wanted to ask you all a favour. If you would be happy to be included on a list (which we will keep) to offer your help to newly diagnosed families, could you send a note by emailing us through this link
I propose to keep a country-wide list that we can share with new parents who contact us. Hopefully then, parents can meet up and share their experiences – something we have been lucky enough to do with a good number of you.
In addition, if you are parents of newborns or very young infants with ANSD and would be prepared to join a research study at the University of Manchester (Oliver has already signed up – Alice was too old!) then we can put you in touch.
Help us to help others…..