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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!
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
If you need access to a disabled toilet and haven't got a "RADAR" key then we have one left at £3.00. If you would like to buy it please contact Deanna. There is an interesting article on the BBC website about disabled toilets and the "RADAR" key! Please click here to read it. If you need to get a key once our stocks have run out they can be ordered over the internet with Amazon having a choice of prices and suppliers.
As many of you may know, Ataxia UK held its annual conference on the 4th & 5th October at the Radisson Blu Hotel at Manchester Airport. The branch was well represented with Themis, Talita, Deanna and Tony attending. As always the conference was very well organised with the ability to choose breakout sessions closely matched to your needs. The conference wasn’t just about learning and information sharing it was a great social occasion allowing you to renew friendships with folk you have met at previous conferences. As you can see by the following picture, Deanna and Talita certainly appear to be enjoying themselves!
There were many guest speakers, but perhaps the most inspiring was Helen Kearney who was diagnosed with Friedreich’s Ataxia in 2001 at the age of 12. This did not stop her love of horses and riding and she won a silver and two bronze medals in the London 2012 Paralympics for Ireland. Here is a picture of Helen with one of her medals and Sue Millman the Chief Executive of Ataxia UK.
Tony was asked to take pictures of the weekend’s events as they unfolded. However he and Deanna were in for a shock on Saturday afternoon. Deanna was sat among everyone in the audience at the conference and Tony lay in wait ready to take photographs of the award winners. To his and Deanna’s extreme surprise, and delight, they were jointly awarded the Ernie Heath Shield. What was very unusual is that the Ernie Heath shield is normally awarded to those who don’t have ataxia but who make major contributions to those with ataxia and to Ataxia UK. Tony does not have ataxia but Deanna does but Ataxia UK felt that they made such a team that they could not separate the two! Here is a picture of Deanna and Tony receiving the shield from Ataxia UK Trustee, Andrew Downie. Ataxia UK have even issued a press release about it!
The 25th September was Ataxia Awareness Day and branches were encouraged to support it with activities designed to raise the profile of ataxia and Ataxia UK and fundraise. In previous years we have had a presence in Brent Cross, a local pharmacy etc. This year we tried something different, our first cake bake. This was held on Thursday 26th September at the National Hospital for Neurology and Neurosurgery in Queen Square London. The committee chose that day to coincide with the Thursday Ataxia clinic held at the hospital. Members of the branch and their friend and relatives did a superb job at baking an amazing array of delicious cakes and pies. Probably the most difficult challenge of the day was to transport everything safely to the hospital. Public transport would have been impossible, so we had to drive everything there, and mercifully we were able to unload and park up very close to the hospital. Here are just a few pictures of the day’s activities.
The cake bake ran from approximately 11:00 in the morning to 5:00 in the afternoon. Our stalls were very well manned thanks to the excellent support we received from branch members, friends, relatives, and friends of Ataxia UK. The only difficulty experienced was when the ladies disappeared for lunch and the men had to hand out the cakes. The handing out of the cakes and collecting donations was easy, what proved difficult was answering questions about what the cakes were and what was in them! Much to our surprise a number of people wanted whole cakes. We even had a request from one lady to deliver a cake to one of the wards as a gift to the staff for what a splendid job they were doing. At the end of the day we tried to guess the total donations received. We grossly underestimated, we raised a total of just over £212. The committee would like to express its thanks to all who helped make the day so successful.
Some of Deanna's friends got together to do some fund raising for Ataxia UK by doing a sponsored walk along the river Thames. This took place on the 16th June.
The walk was completed successfully but not without incident! We arrived in Windsor only to discover two major events were running on Sunday 16th June and many of the roads into Windsor were closed. So walkers were dropped off as close as possible to the meeting point with some walking towards Windsor to meet those walking out! Having said that, the elements were very kind to us with only occasional light drizzle. No injuries to report, just two ibuprofens taken from the first aid kit. Our thanks to all those who walked, supported the walkers, and donated to the cause! The Just Giving Pages are still open but to date including off line donations we have raised over £1400. Here is a picture of the intrepid team.
More information about the walk can be found on Deanna's Just Giving Page.
On 29th June 2013, Madison Bridgewater from Ataxia UK visited us and spoke to us about fundraising within Ataxia UK. This wasn’t as well attended as recent meetings but we do realise that we are now in “holiday time”. For those who couldn’t make the meeting and would like to know what was discussed, Talita kindly took some notes. You can read them here.
Waitrose supermarkets runs a scheme called “Community Matters”. Waitrose Community Matters Waitrose’s way of giving something back to the local area. They do this by donating money to good causes nominated by their customers. Each month, every branch donates £1000 to local good causes, divided between three organisations. At the checkout, shopper are given a green token, and on the way out they can place them in a collection box for their chosen organisation. At the end of the month the £1000 is divided up according to how many tokens each organisation has in its box. If you have a Waitrose supermarket near you and you haven’t recently submitted a form please collect one in store and fill it in. Here is a link to a sample form plus some notes to help you fill it in.
Saturday 11th January 2014, 12:00, Lunch, AGM (annual general meeting) and entertainment at the Traveller's Rest Kenton - More details will be available soon.
The committee are hard at work devising a programme for next year. Like 2013, the meetings will be a mixture of “events” and routine, bi-monthly informal Saturday afternoon 2:30pm “get togethers” at the Traveller’s Rest in Kenton. Dates for the events will be published once they have been arranged. The following are the dates for the informal “get togethers”
February 15, April 26, June 14, August 9, October 18.
The date in October may change depending upon the date selected by Ataxia UK for the 2014 annual conference. Only five dates have been scheduled as the sixth one would be in December, and that is when we usually have the Panto outing.
Our most recent get together was held at The Travellers Rest in Kenton. It was a couple of months since our last gathering as there was no meeting in October due to the Ataxia UK annual conference. The pub looked after us well (as usual) and we sat in a slightly different area that was nice and secluded giving us a measure of privacy and stopped our laughter disturbing other guests in the pub! The meeting was well attended and it was great to see some new faces alongside some folk we haven’t seen for a while. As you can see from the pics a good time was had by all.
We met up for tea (and more!) in the Tea Rooms at Ferny Hill Farm, Cockfosters. We haven’t met there before and despite the weather and countryside location we had an excellent turn out. The staff were accommodating and the scones were delicious. So much so that the staff received a request for a take-away order of scones and cream. It was a nice relaxing afternoon with good conversation in a relaxing environment. As you can see from the pictures, a good time was had.
Unlike years gone by the weather was perfect for a picnic, warm and sunny without it being too hot. Kenwood is a lovely location but we could not go into the house as it was closed due to a major refurbishment. Unfortunately we did not have a very large gathering at Kenwood, but those who came had a thoroughly enjoyable time as the pictures prove.
We can wholeheartedly recommend a visit to Kenwood. For more information take a look at their website Kenwood. There is even a shuttle service to run you from the car park to the house, gardens and café. If you are reasonable mobile a short walk from the café gives you splendid views over London.
Following our successful lunch and quiz in March, and based upon how popular that combination proved to be, we held our second lunch and quiz. Prior to the quiz we enjoyed a good lunch well up to the high standards set by the Traveller’s Rest. We had a surprise bonus! The sons of some friends of Deepak are aspiring magicians and they came along and kept us entertained with some excellent illusions including some very good card tricks. Penn and Teller watch out!!!
We had an excellent turnout and we easily had enough folk to have four teams competing in the quiz. Some of the questions were a little tough, some easier, but the musical rounds were well received with most people nodding their heads and singing along to try and figure out what “numbers” and what “colours” were in the title of the songs that were played. Everyone was a winner with the prizes being devoured (Smarties! very appropriate for how smart the teams were). The quiz was enjoyed by all and it will definitely challenge the committee to come up with further ones 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.
Next event: Christmas Pantomime, Sunday 15th December, meet at 4:30 p.m, St. Albans Arena
Mrs Deanna Kaye
Telephone: 02084206557 or 07752180372