London

General
1

Are there any members of this site from London UK ? I would really like to find someone from England that I can meet when we are called for my daughter to be seen at Great Ormond street Hospital.

Thank you

2

I am joseph.""" And go often."""“every 6 moñths to see dr Giunti”.

3

Alan Thomas, I believe

4

Thank you for answering Joseph. Are you also a client of Great Ormond Street Hospital? I have heard that in London you have an Ataxia Centre, but I am not sure whether we would be sent there as well considering we live in Malta.

joehamed said:

I am joseph.""" And go often.""""every 6 moñths to see dr Giunti".
5

Yes, I go to London fairly often, in fact I am attending the Genomics England meeting on Thursday http://www.genomicsengland.co.uk/october-stakeholder-event/

would like to meet up

Please keep in touch

Alan

Ataxia South Wales chairman

6

Go a bout every 6 months to the ataxia clinc at the National hospîtal usually on a thurs

7

Sorry.Live in Wiltshire but personally go up to Oxford.Lots of my old group from the newly formed Dorset Ataxia UK go and see Giunti.One of our members lives in Croydon and knows a lot about Ataxia.Look at his new venture about Mindfulness.

8

Great Ormond Street is a short walk from Ataxia Centre but you have to look for Neurology as it doesnt say Ataxia Centre outside.

I live outside London but you are welcome to visit. Good Luck.

Patsy

9

Marie
how did it go last fridaydd

10

Thank you all very much. Being a Registered Nurse myself I was at a complete loss when I was told that my daughter would never improve. Considering that the population of our island is just 400000 and incidence of Ataxia being that of 1 in 100000 most probably my daughter is the only person with ataxia up to now, therefore we can only get the support we need from England. I am not considering this as defeat but I would do my best to find out what can help my daughter and persons especially children suffering from this rare condition. Maybe some day I can contribute better, but for now we are only in a position to seek what is best for my daughter.

Thank you all once again

11

Dear Noel, You sound like a wonderful, loving parent! I have ataxia, but live in the States, just wanted to welcome you to this site! I sincerely hope all will go well for your daughter! ;o)

12

Hi Noel - If you click on the “Members” tab above, you can enter “London” in the advanced search area and those members who listed “London” will come up for you.

13

Hi Noel!

I just want to add my very best wishes for you and your daughter. An enquiring mind

is big help. You should be well looked after at Great Ormond Street. xB