DONT STOP ME NOW

Where do I start ?? TIME has gone so FAST !!

Attendance at SENEDD for Welsh Assembly Rare Disease Day Reception http://www.raredisease.org.uk/rdd_2011_wales.htm

Directly from Cardiff I went to the train station to meet Dawn and start our travel to Heathrow Airport to catch a flight to Los Angeles to attend the National Ataxia Foundation http://www.ataxia.org/ conference
A fantastic time, meeting friends I have only meet “online”, making new friends, meeting Ataxia researchers, plus general NETWORKING. Photos at http://www.flickr.com/photos/alanroygbiv/sets/72157626456965050/

After the conference we flew to San Fransico for a few days and then flew to New York (upgraded to Business class!)

On our return we went to see Sarah Outen http://www.sarahouten.com/ at the start of her challenge
I then caught a train to Sheffield Ataxia Support Group meeting and from there went on to Birmingham to the NAIDEX http://www.naidex.co.uk/NaidexBir11/website/Default.aspx?refer=1 (Disability Exhibition
(here I bought a Trabasack http://www.trabasack.co.uk/ an EXCELLENT item to allow much independency for many people including wheelchair users.

Following this the Treasurer (from Ataxia South Wales) and I went to Leicester to go to the Ataxia UK branch officers conference.

A week later I had a phone call, with some DEVASTATING news.
The chairman of Sheffield Ataxia Support group –David Greggory (26) had passed away, he will be sadly missed. RIP

A few days later we went to Fishgaurd to see Lee Morris start the Welsh phase of his “No-Limitz” round UK cycle. Lee on his recumbent tricycle went to Tenby via St.Davids and then on the second day on to Cardiff.

Later that week I travelled to London to the RaceOnline 2012 http://raceonline2012.org/ and attended http://www.nd11.co.uk/ and was able to meet Stacey Solomon (X-Factor)

As soon as this was over I returned home and then went back to London for an Ataxia UK board meeting, then up to Sheffield (Hallamshire University) fo an Ataxia study day.
I had to return to Sheffield for my check up at the Ataxia clinic in the Royal Hallamshire Hospital.

All this, as well as attending meetings in Carmarthenshire and Pembrokeshire at many disability events as well as negotiating the sponsorship of printing a new Ataxia South Wales A5 flyer, this printing was done by a Milford Haven printer http://www.megaprinter.co.uk/ MANY THANKS TO Tom and Staff at Megaprinter.

At the beginning of July we went to Cardiff – I was asked to join a crew of a Dinghy at Cardiff White Water Center http://www.ciww.com/content.asp A GREAT ADVENTURE, plus it was a very HOT day and it was nice to get in the water.

At the end of July http://www.caerphilly.gov.uk/bigcheese/english/index.htm is an event we have attended over the last few years. As we have family living nearby, it is a good chance for us all to spend the day together.

This week I travelled to Reading to meet up with a fellow Ataxia UK and the following day I went to London, to travel on the bus, underground and Docklands Light Railway, to see how travellers with mobility issues can travel on transport in London this was for http://www.freetraveller.co.uk/ Hopefully this information will help travel for disabled citizens.

I was a bit wary of travelling in London with all the RIOTs happening, but all was fine plus there was a definite POLICE presence.
This weekend we have the Ataxia South Wales meeting in Coleshill Social Centre, Llanelli.

All Adventures can be seen on http://www.flickr.com/photos/alanroygbiv/

**** BREAKING NEWS ****
Alan -You are in with the chance of carrying the Olympic Flame!

congrats from lots of people including Sarah Outen http://www.sarahouten.com/

Labels: Ataxia OlympicTorch FreeTraveller London Train Underground

Long awaited update !!!!!
time certainly moves on at a fast pace.

To catch up a bit, heres a very brief summary
Train Journeys X25
Plane Journey`s X 6
meetings attended X 27 plus
nights away from Home X 42 plus

Powerpoint presentations at events X 2 plus
look up KT-Equal - past events-16th February

Launch of West Wales Neurological Alliance

While in Tenerife, we went to Candelaria to see the black maddona
and to look for a three (four) ended candle ??

as normal photos can be viewed at flickr = alanroygbiv

also use alanroygbiv to follow me on Twitter

Labels: Update WOW time warp Twitter

A very busy few weeks.
Attended Swansea Disability forum on 5th.
Then on Tuesday 6th took the train up to Cardiff, to meet Holly and Phill, who were filming the “people Task Force” http://raceonline2012.org/peoples-taskforce . see the finished film clip on Youtube http://www.youtube.com/watch?v=RC2MTuxaNeM
Stayed in Cardiff, overnight, as I had a meeting in Swansea at 10.00am – so it wasn’t worth going home and travelling back, the next morning. For those interested the meeting was http://wales.gov.uk/consultations/housingcommunity/digitinclusion/?lang=en
Speech Therapist came to see me on Friday, while I was in Coleshill, on Friday. Everything in order (as well as they can be !!)
Dawn and I went on the train to Cardiff, on Saturday 10-7-10. We were going to the Food Festival- and meet up with ASW members Tim and Alice (as it was Tims birthday, we all decided to do our own thing for the day. Tim and Alice went to the Millennium Centre, Dawn and I went shopping and to the food Festival.
We were hoping to meet up with Gary (from Eastbourne) who was down to watch speedway in the Millennium Stadium http://speedwaygp.com/en/venuecardiff2010/a414 we didnt get the chance to meet as Cardiff was SO busy –with SO many events on the same day !! (the queue for the buses from the Bay to the city were an hour long !!)
Monday 12th a BIG day !!!!!!!!!!!!!
I caught the train up to London, in the afternoon with the race Online2012 team, we were invited to a reception at 10 Downing Street to launch the “Manifesto for a Networked Nation”.
(I went in the front door, of number 10 -in my wheelchair)
We spoke to David Cameron (the Prime Minister) in the cabinet office before he made a speech to everyone present at the ceremony. Read more at http://raceonline2012.wordpress.com/2010/07/14/pm-backs-race-online-2012-campaign/
My comment to race online2012
I was very excited and honoured to attend No10 Downing Street, on Monday 12th July, to Launch the Manifesto for a Networked Nation.To actually enter the cabinet office, (and sit in the PMs chair) was amazing. Plus to talk Face to Face with PM David Cameron was a good experience. It was good to see he was interested in the “Peoples Task Force”, stories.As a Disabled person, it was very nice to be able to enter No 10 via the front door, something I was very keen to do !!. Plus I have had personal experience of how using the internet has benefited me Educationally, Socially and Saving Money, something which every person should be able to do !.I would like to THANK everyone involved at Race Online2012 and 10 Downing Street for a wonderfull afternoon.Over the next two days I attended conferences on E-Access and Building Perfect Websites (held in Olympia 2). These were very good networking opportunities and spreading the word of the race online 2012 campaign.Alan Thomas “peoples Task Force”You can view race Online2012 YouTube videos athttp://www.youtube.com/user/raceonline2012
The next 2 days were spent at meetings in Olympia2, London (eAccess on Tuesday and Building perfect NHS/council websites (Accessabilty) on Wednesday.
Thursday was a virtually free day. Made my way to Race Online2012 office then I went to visit Ripley`s Believe it or Not http://www.ripleyslondon.com/ very good.
(On the way, I managed to find myself in the middle of setting up for the premier of the Karate Kid in Leicester Square !! )
Upon leaving I was rushing for the bus, my wheelchair wheel missed the ramp into the bus, I ended up on the pavement (on my back) in the middle of a very busy Piccadilly circus !!!.
Back to the premier inn (tower bridge) to meet up with friends.
Friday 16th I and fellow trustees and staff (of Ataxia UK) met in the office, for an “away day” (wrong title as it was a day in the office) a good day looking at the Strategic plan for the next few years.
Following day we returned to the office for a trustee board meeting, to discuss, many, matters.
Sunday 18th return home, by train (I HAD booked mobility assistance, but Paddington, had NO record of it !! second time this has happened)
The first thing I noticed was how the air is REALLY fresh and much cleaner I could tell the dramatic difference, from being in London for the week.
As always photos at http://www.flickr.com/photos/alanroygbiv/

Time is running away--FAST !!!

Only got time to upload photos, to flickr www.flickr.com/photos/alanroygbiv

plus we have a new website to look at www.ataxiasouthwales.org.uk

dont forget Alan is taking part in the UK Wheelchair challenge www.ukwheelchairchallenge.co.uk

sponsor http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showfundraiserprofilepage.action?userurl=AlanThomas1

How time flies !!!!!!!!!!!!!!!!!!!!!!!!!!!!
The following events attended (with the odd detail)
Wales Neurological Alliance meeting in Cardiff Bay (24-3-10)
Due to Industrial action (outside the SENEDD) we had to relocate the venue to the Urdd offices, opposite. This was arranged at short notice many thanks to Buddug, for arranging this.
Attended a small group to enable us to exchange some disability awareness (25-3-10)
Made a Train Journey up to London. Visited the Ideal Home Expo, in Earls Court (26-3-10) I managed to catch up with http://www.cyclo-ssage.com/ where I had another relaxing massage, before making my way to the hotel ready for meeting up with friends for the Ataxia UK board meeting, the next day.
Monday 29-3-10, w went to Sinclair Volkswagon, Neyland to pick up our NEW VW Touran. A Motability car. We chose another Touran as we were very happy with the last Touran.
Asked to attend a meeting with Whitland town Council, to explain the services available from the Green Dragon Bus / Preseli Rural Transport Association http://www.prta.co.uk/prta%20English/home.htm This meeting proved an advantage from all parties involved.
Ataxia South Wales meeting was arranged for Sunday 11th April @ Newport Gwent.
As we had no venue suitable available to us we had a meeting and lunch in a Toby Carvery.
NOT ideal, but next time we can source a more suitable (quieter) meeting place.
We managed to discuss, things after having Sunday Lunch. One item was the interest in a Website for our Branch, which this is the result www.ataxiasouthwales.org.uk and a Facebook page http://www.facebook.com/pages/Ataxia-South-Wales/112678352094257?v=wall (no login required).
Nice Sunday (18-4-10) picnic along the Cardigan Coastal path (along the top of some scary narrow cliff top paths !. the path crosses a golf course so you have to keep your eye out for flying balls !!!!. I managed to clamber down some rocks to the sea and managed to gather to golf balls and return them to some ammeter players.
Cardiff (19-4-10) meeting to discuss the setting up of the Wales Neurological Alliance website.
Train journey to Birmingham NEC (21-4-10) to attend NAIDEX (Disability Expo)
Where some friends had arranged to meet up.
The NAIDEX Expo was Very good, saw alot of usefull items and made alot of networking contacts.
I met up with two other Ataxia UK Trustees and we had a WONDERFUL time at the show, even made an interview with Sally of Able radio http://www.ableradio.com/ our interview was broadcast on Monday 26-4-10 at 11.00am.
I spent rest of Wednesday and all Thursday at NAIDEX where I met some other member of ASW friends of AUK and on-line members of LWA http://www.livingwithataxia.org/
On the Friday I caught the train to Birmingham New Street, where we all met up again. I met Dawn there as we were going to Leicester for the AUK Branch Officers Conference Weekend.
Our next leg of the train journey, was shared with two great friends and fellow trustees, who were also attending. Once at the venue (University campus) we met with other branch members and friends, and checked in to our rooms (most of us had the same rooms allocated to us as when we attended last year)
We all met up for drinks and a meal as well as a short “Getting to know you” workshop this was very interesting and amusing.
A short spell in the lounge bar, before bedtime, Saturday was the “workday” of the weekend.
We covered various topics about being a AUK branch, in the afternoon we had a session on the AUK website branch pages, and how to contribute to them.
Very informative. We worked in groups for this with me having my Laptop with me, made sure that each group had a laptop each .
After dinner that evening we had a FANTASTIC evening in the lounge bar. We took part in a quiz, with some TOP space scientists, that were also there (we didn’t win ???).
Sunday we said our farewells and all started our journeys home. Ours was the longest as due to the railway engineering our journey was via a different and much longer route than normal !!!
I went and attended the PACTO event, in Queens Hall, Narberth on Tuesday (27-4-10)

Pembrokeshire Association of Community Transport Organisations http://www.pembrokeshiretransport.co.uk/content.asp?nav=677,696&parent_directory_id=673
Very interesting and educational (in community transport terms) good networking opportunities.
Wednesday back in Cardiff Future Inns, for Disability Wales http://www.disabilitywales.org/1903 Launch of the Independent Living campaign. Another good day of networking and meeting new people plus mixing with a few Assembly members.
If you want you can sign a petition on the Welsh Assembly website here e-Petition: National Strategy on Independent Living http://www.assemblywales.org/gethome/e-petitions/epetition-list-of-signatories.htm?pet_id=466&prncl_ptnr=DisabilityWales&clsd_dt=17/12/2010
Thursday (29-4-10) travel (short journey 17 miles) to attend Local Health Board ; Health + Well Being meeting in Carmarthen
Very good, but when I got back to the car I found I had a parking ticket !!! £50 !!!!
For parking too long in a disabled bay, in a car park (I WAS DISPLAYING MY BLUE BADGE) I was with councillors in the meeting and even they were advising people that car parking for the disabled car parking spaces have unlimited time !!!
Went to the new cinema in Carmarthen on Sunday 2nd May watched Iron Man 2 http://ironmanmovie.marvel.com/ bit slow story line, alot of fast pace shooting/violence, for a 12A cert. (oooo your getting old Alan)
This week planning for more train journeys to attend meetings.
As usuall photos at Flickr http://www.flickr.com/photos/alanroygbiv/

Not much, to report.

Went to Cinema, on Saturday 13th, saw Alice in Wonderland http://www2.disney.co.uk/DisneyMovies/alice/
Not VERY good (should of taken more notice, of the reviews saying “how bad” the film is).
Monday, I attended Cardiff Neuroscience Open Day (Invite and ticket only)
As part of BRAIN AWARENESS WEEK http://www.cardiff.ac.uk/cnc/news/Brain%20Awareness%20Week/BAW.html
A West Wales Neurological, meeting in Haverfordwest, on Thursday
Carmarthen Disability Coalition, meeting on Friday http://carmarthenshiredisabilitycoalition.org.uk/index.html
Plan and book some more train journey`s, with the odd short flight added for a change !!!
Row the Atlantic, boys Tom and Richie completed their adventure on Wednesday 17th http://www.rowingtheatlantic.com/
This Friday, off to Ideal home expo http://www.idealhomeshow.co.uk/ on my way to an AUK board meeting, on Saturday.
Been using the scanner alot the last few days, got to compile a “powerpoint” presentation, for an AUK mini-conference.
Woo Hoo Woo Hoo picking up a new mobility Volkswagon Touran, next Monday.

A fairly, long time, since, the last entry ! time just seems to whizz by.
(they say “once you leave school, time just flies past” well thats TRUE).

Jason and I went to the cinema, in Cardiff. To get to see 2 films that coincided with the, return, trains, we booked Alvin and the chipmonks http://www.chipmunks.com/#home (very predictable)
And Avatar http://www.avatarmovie.com/ 3D (very very good, and the main actor, uses a wheelchair)
Friday 19th
I was at a Pain Management for Chronic Illnesses at Swansea University. I was taking part in the Q&A presentation, with another person and prof. Baroness Llora Finlay.
On the weekend Dawn and I went to the Holiday Inn, Bristol Parkway, to meet up with other Ataxians. It was FANTASTIC, to catch up and CHAT, face to face, rather than on-line.
Dawn and I went to Cribbs Causeway, shopping (a good place, to spend the day) we also took advantage of the hotels swimming pool.
On the evening of Tuesday 23rd, I attended the Wales Neurological Alliance Cross Party event in Ty Hywel, National Assembly, Cardiff. A very good Networking evening, for Ataxia South Wales. Again, on Wednesday, evening, I was back at the SENEDD, in Cardiff, to attend the Rare Disease Day, along with AMs, and other members of WNA.
Rare Disease Day falls on 28th February. http://www.raredisease.org.uk/rarediseaseday_2010.htm

Tuesday 2nd March, I went up to London, as an invitee of Martha Lane Fox (Governments Digital Inclusion champion). http://www.marthalanefox.com/
A team, of us, gathered in her London office, for lunch and small presentation, we then all went to the house of commons, to meet MPs, and aire our experiences, with Digital Inclusion. It was then time for “letting our hair down” (not easy, in my case !) we all went to Lucky Voice Kareoke bar http://www.luckyvoice.com/
Next day, I took a bus, across London (NOT RECOMMENDED, without meticulous, previous, planning !!), to Ataxia UK, Offices, for a brief, impromptu, visit.
Thursday 4th, Disability Wales, rang me , to ask if I would be willing to be interviewed for BBC Wales, on the new announcement on Wheelchair Services, in Wales.
The broadcast went out that evening on Radio Wales at 4.50 pm.
The Destinations and Travel show was on the agenda, for Saturday http://www.destinationsshow.com/birmingham/welcome/
Result = just one or two places to add to the “where to go?” list
On the way back, we called, for coffee in Hereford and met up with good friends Tim + Alice.
We then carried on towards home, we called in with Melanie and James, and Kira. Kira is the new addition to the family. My great niece.
This week, planning some attendance at meetings
Sorting out train travel and booking some accommodation for some, meetings that require an overnight stay, due to distances.

Dont forget to keep supporting two boys are rowing across the Atlantic. Checkout their blog http://blog.mailasail.com/redarrow
Also checkout http://www.4deserts.com/blogs/comptetior_blog_new.php?pid=NTk1&blog=16
Marilena is walking across the Atacama Desert in Chile, to raise funds for Friedreich's Ataxia (FA).

My photos at http://www.flickr.com/photos/alanroygbiv/