Ataxia UK London North-West Branch

While we are called The N.W. London Branch, you don’t have to have an NW postcode to join us!

Anybody who finds the locations of meetings and events convenient is welcome to join, including carers. Currently we have members in Barnet, Harrow, Ealing, Brent, Enfield, Hillingdon, plus Watford, Hertsmere, St Albans, and Three Rivers.

We usually meet every four to six weeks for an afternoon social get together or an event. We are a warm, lively, friendly group who welcome first timers who will hopefully become regulars! We have no membership fee but contributions towards stationary and postage are welcome!

NEXT EVENT DETAILS

BRANCH NEWS

DATES FOR YOUR DIARY

RECENT EVENTS - 30th April 2013 - UK Welfare Reform

RECENT EVENTS - 23rd March 2013 – Lunch and Afternoon Quiz

RECENT EVENTS - 16th February 2013 – “Ataxia Research Afternoon”

RECENT EVENTS - 26th January 2013 - Afternoon Tea & "get together" at the Travellers Rest

RECENT EVENTS - 22nd December 2012 - Panto Outing - Aladdin

BRANCH NEWS

Some of Deanna's friends have got together to do some fund raising for Ataxia UK by doing a sponsored walk along the river Thames. This will take place on the 16th June. More information can be found on Deanna's Just Giving Page.

Facebook! We now have our own Facebook pages, so whether you are new to Facebook or an old hand, please take a look and help to make it a lively place. If you need help with your Facebook account or would like to join the group please click on the following link to e-mail your request or query:- Ataxia UK NW London Facebook

DATES FOR YOUR DIARY

The committee are busy working on a range of events for 2013. However, what has become apparent is that many members of the group value the opportunity to meet up on a regular basis. Thus we have scheduled a number of informal get-together afternoons at the Travellers rest in Kenton throughout the year. They are all Saturdays at 2:30 on the following dates:-

May 18^th, July 20^th, September 21^st and November 16^th

The get-together for March 30th has been rescheduled for the 23rd March as a 12:00 lunch, followed by some after lunch entertrainment. Please see the Next Event for full details.

RECENT EVENTS - 30th April 2013 - UK Welfare Reform

We had Vicki Phillips from the Harrow Citizens Advice Bureau visit us to speak about the changes that are taking place to the benefit and welfare system. All those who attended found the session very useful. Vicki was kind enough to provide hand-outs to those attending. However we recognise that not all those who wanted to attend could, so if you would like a copy of her hand-outs please click here. Additionally we have a video of the talk, kindly recorded by Henry Silver, that you can view below.

Deanna with Vicki Phillips from Harrow Citizens Advice Bureau http://www.harrowcab.org.uk/

RECENT EVENTS – 23rd March 2013 – Lunch and Afternoon Quiz

It was great to see about 20 people who turned up for lunch in spite of the very cold and snowy weather. The hot food was most welcome and warmed us up for our quiz. It was the first quiz event that the committee had organised so we weren’t sure what to expect. The good news was that you didn’t have to be up to “Mastermind” standards to answer the questions. We had several rounds on a variety topics including a couple of musical rounds where you had to name the title of musical excerpts where all the titles contained a colour or numbers. As you can see from the following picture the “Blue Team” were taking things seriously!

Everyone was a winner with the prizes being devoured (Cadbury’s chocolate crème eggs). The quiz was enjoyed by all and we’ll challenge the committee to come up with another in the future.

Here are a few more snaps from the day with most people looking very happy having had a good lunch and a great afternoon.

RECENT EVENTS - 16th February 2013 – “Ataxia Research Afternoon”

Deepak kindly acted as our host for the meeting and was the perfect host ensuring we had enough seats for all of us, not a trivial task as there were approximately 25 of us there and that we were fed and watered! It was very pleasing to welcome new faces as well as some folk we haven’t seen for a while. The afternoon consisted of two sessions about research into Ataxia. In the first session Kate who has been studying for her PhD shared with us some of her work on the diagnosis of brain CoQ₁₀ levels. After a break for refreshments Tony chaired a session to collect feedback for the Ataxia Clinic at the National Neurological Hospital about those with ataxia participating in research and ideas for research aimed at looking at aspects of care and well-being. Both sessions were very lively with plenty of questions and discussion. Here are a couple of pictures at the event with a very relieved looking Kate after her presentation!

The following is a link to Kate’s presentation for those who would like to be able to view it again and for those who could not attend.

The diagnosis of brain CoQ₁₀ levels.

The following is a link to the notes kindly taken by Talita capturing our feedback for the National Neurological Hospital.

Clinical Trials and Research Ideas.

These have already been shared with the neurogentic nurse associated with the Ataxia clinic. The following was the response to our discussion:-

“Wow, that's really great feedback. You guys did a great bit of work there yourselves. Please thank everyone for us, and Talita for writing up the notes and comments so well. Dr Guinti will be back next week and we will certainly discuss this.

Really great job guys, I'm very impressed, there's really a lot to work on there.”

So a big thank you and well done to everyone who attended and contributed to this.

RECENT EVENTS - 26th January 2013 - Afternoon Tea & "get together" at the Travellers Rest

Our most recent get together was held at The Travellers Rest in Kenton, a location that appears to suit most people very well. It was great to see folk out and about following the recent snowy weather. It is always pleasing to see new faces at meetings and we were delighted to welcome a "first timer" who found the group friendly and very chatty! As always the pub looked after as well as we enjoyed good food, good conversation and good company! As you can see from the following pics, we had a great time that was shared by two furry guests!

RECENT EVENTS - 22nd December 2012 - Panto Outing - Aladdin

Our seasonal "panto" outing this year was to the St. Albans Arena to see Aladdin. A great time was had by all who attended who really got into the spirit of booing and hissing at the "baddie". The theatre gave our group as special mention and even though there we weren't a very large group we made a noise out of all proportion to the number of us there. The theatre looked after us very well and as soon as we reached the interval our pre-ordered ice creams were delivered to us, yum! Did we have a good time? Oh Yes We Did!!!