Ataxia Conference 2018

[Capricorn9157]

Hi all, have just got home from the conference weekend (after a diversion to Newcastle!!!!) and thought I would share some of my experiences. (Harriet, I apologise if some of the facts are wrong - my bad... )

It was a GREAT time. 'Conference' makes the occasion sound formal, but it is anything but...It was great to meet others who understand my condition and me not having to try and explain. We compared 'notes' and swapped our stories in a relaxing atmosphere and had lots of laughs. Made some new friends from around the country and exchanged contact details with some so it was good

The venue and staff were also superb and helpful, which is a major plus. The food and rooms were as advertised.

The AtaxiaUK staff were there in numbers and always a smile on their faces - even Sue Millman (CEO) gave us a sample of her singing prowess (I will not spoil it for you who havent heard her sing by giving my thoughts....;))

The guest speakers were entertaining. A big Thank You must go to the Sheffield Ataxia Clinic team. The Q & A was very informative and, I think, helped some Ataxians with their concerns - High five to Prof H and all...

It was, overall, a fantastic and entertaining time and I will definitely go next year - October 2019 at Stanstead and a regional one in June at Cardiff - and I urge you to keep your diaries clear and make it to either one yourselves.

One great bit of news given to us. An effective treatment has been found for SCA38....hooray, one down but still more hard work to find help for the other types. 'Great Oaks from little acorns grow'. But we, as a community, have to work hard to raise funds to pay for all the research still needed.

For those who have not already done so, PLEASE, PLEASE visit ataxia.org.uk and sign up. From there you can look for a Support Group in your area, or if not, why not start your own? The Ataxia Staff are brilliant in giving support and help for those in need - advice on how to raise funds, helping out etc. All you have to do is ask.

I am sorry I have run on but hope it has given you an insight into the 'misnamed' Conference and you will join AtaxiaUK. We all need to increase awareness of this relatively unknown condition and get more funds to help research.

If anyone has any questions about my conference experiences, please do not hesitate to ask.

Thank you for reading this (if you managed it :|)

GOOD LUCK ALL

Steve

[HarryB Administrator]

Hi Steve

Reading that brought tears to my eyes-in a very good way! It was indeed an extremely informative and enjoyable weekend and I am delighted you enjoyed it so much. I think your notes of the weekend are excellent!

Roll on next year!

Harriet

[Capricorn9157 in reply to HarryB]

Thank you H I am just sorry to have not been able to say 'Hi' to you but top of my list for Stanstead...Keep up the good work

[pollybanana]

It seems you had a great weekend . Thanks for sharing, maybe next year 😀

[Capricorn9157 in reply to pollybanana]

Cheers...hope to see you there. Maybe one day AtaxiaUK will need to hire Wembley to cope with the numbers...

Steve

[Namitaytrev]

Hi Steve

What is the effective treatment they mentioned for SCA38?

[Capricorn9157 in reply to Namitaytrev]

Hi Namitaytrev,

Sorry, nothing specific - Just that a cure had been discovered. Your Consultant may be able to get further info for you.

GOOD LUCK

Steve

[SueMillman Partner Ataxia UK in reply to Namitaytrev]

Hi Namitaytrev, Do you have SCA38? Do you live in the UK? Up to now we haven't found anyone diagnosed with SCA38 in the UK because it isn't being tested for here. If you have it please get back in touch and we can let you have the details to show to your neurologist. Thanks Sue

[Namitaytrev in reply to SueMillman]

Hi Sue

I have SCA3 and was just curious about the treatment for SCA38.

Also, I live in the US. In Texas.

Nami

[february]

WISH I could attend the UK conference, but I live across the pond in the USA! Sounds like it was a a very enjoyable time with a lot of informative information!!! ;o)

[SueMillman Partner Ataxia UK in reply to february]

Hi February, The National Ataxia Foundation Conference in the USA is just as good and has 3 times as many people at it! You can find the details of their next Conference in Las Vegas here: ataxia.org/2019-annual-atax.... People from the UK often go over to it. Sue

[Capricorn9157]

It was very enjoyable and informative. Its a shame you do not have access to one over there. Maybe if you contact the Ataxia charity over there (if there is one) and suggest it to them you may have your own. Dont ask, dont get

GOOD LUCK

[neta]

What is SCA 38?? You sound perfect. R U sure u have ataxia?? N

[Capricorn9157 in reply to neta]

SCA38 is a rare form of Ataxia and so far no-one in the UK has been diagnosed with it. And no, I am not perfect, unless a square is a perfect circle. Yes, my Consultant has diagnosed me with Ataxia and has the scans to prove it...

[neta in reply to Capricorn9157]

I didn't mean to sound like a doubting Thomas... Is SCA 38 known by any other name???

[Capricorn9157 in reply to neta]

Its OK...no worries, didnt think you were.

I dont know about any other name for SCA38. I only heard about it recently and believe, though might be wrong, its a fairly recent discovery which is why its not looked for over here and possibly why its rare.

But, having said that, now one cure has been found hopefully others will follow.

[neta in reply to Capricorn9157]

Hopefully and thanx! xxx Ñ

[february]

Thank you, Sue!!! ;o)