Prader Willi Syndrome

We arrived at 9.25am after a long but pleasant journey, to be greeted in the sunken lounge by Narinder from PWSA. We all had coffee and introduced ourselves to each other.

 

 

 

We were then divided into groups and we went into separate rooms 2 of which were craft rooms for people with the Syndrome to get together. They did arts and crafts and had 2 talks with Kendra and David Palmer about what Prader-Willi Syndrome meant to them and how they could make their life better.

 

 

 

Service Providers, families and Carers sat together, talked about the PWSA and how it could be improved chaired by the PWSA Jackie Waters and Jackie Kearnes.

 

After tea break we had an interesting talk from a young lady who had PWS and was in full time employment and her experience of this and how she coped. This was followed by a debate by families, Service Providers and Carers on how to improve employment opportunities.

 

In the afternoon we looked at arts and crafts made in the morning and there was a chance for everybody to chat and share experiences and network. We met many people from all over the country who had connections with people who had Prader-Willi Syndrome.

 

In the evening we went back to the Travel Lodge and prepared ourselves for the evening where we had a disco with everyone that had been there for the day. We all had a sit down meal and drinks at the bar. DP had a little dance with old friends and everyone else danced the night away!

 

After a good nights sleep at the hotel, we made our way back to Hastings and Robertsbridge and all arrived tired, but happy early afternoon on Sunday.

Further to our news item posted on 14^th May, I returned safe, sound and full of information and enthusiasm from the IPWSO conference. 

 

I spent my time for the first two days in the Caregivers section of the conference, as this was a direct follow on from the two trips to Herne, Germany in 2008 and 2009.  It was great to hear that all the hard work in Herne is now coming to fruition with the Caregivers manual being published and this will be available from September time this year.  The cost, we were told, will be about 25 Euros, which seems to be excellent value for money.

 

The last few days of the conference, all the delegates were together, and there was an overview of what had been presented at the caregivers and the scientific sections.  The whole experience was brilliant, and it was really good to catch up with friends from all over the world with the same aim. 

 

 

There were 7 of us in total from the UK, being Jackie Water from the PWSA and her partner Pete, Maria Jordan Chairman of the Trustee Board of the PWSA UK, Professor Tony Holland, two researchers from Birmingham and myself.

 

We were treated to a sightseeing tour of Taipei and a gala dinner off site from the conference centre.  It was good to have a bit of time to see some of Taipei and I know that some people took a few extra days as annual leave to see more.  Taipei had, until recently, the highest building in the world, and I was fortunate enough to have the time to go to ‘Building 101′ and take pictures from the top. 

 

 

At the opening ceremony and the Gala Dinner, we were delighted to see a group from the Taiwan Foundation for Rare Diseases perform, some of these people have PWS.

 

 

On Sunday, after the close of conference, there was the bid for  the International Conference in 2013.  Jackie Waters, Maria Jordan and Tony Holland did the UK proud, and the bid was won by the UK.  So, get ready for July 2013 in Cambridge.  We will post further news about this as it becomes available, but, of course, you can get the information first hand from the PWSA website

 

Everyone who wanted a holiday that lives at New Directions has now been away for their break.  We had 7 different groups going to various locations, these included Centre Parcs (Longleat and Sherwood Forest), Butlins and London.

 

There are a variety of photos below of the great time that was had by all.  There is a short report on one of the holidays during which Nick was admitted to hospital, and obviously this was not a great time for him, although we are happy to say, that Nick is fit and well now, so they looked after him really well at the hospital in Salisbury.  However, apart from that difficulty, everyone else has come back stating that they had a great time, and we hear that there are already some ideas as to where some people would like to go next year.

 

 

Tomorrow morning (at the crack of dawn) a group set off from Hastings and Robertsbridge to attend the Our Way of Life conference organised by the PWSA. 

 

There are 5 people who live at New Directions attending and they are all looking forward to the event (if not looking forward to having to be on the road at about 0500!)

 

We wish everyone attending this event a successful, informative and, importantly, a fun time.  More news next week when everyone is home.

Congratulations to Duncan Pearce, who won the Employee of the Month Award for May! This was in recognition of his involvement on a Service User Holiday where a Service User suffered a health emergency and for exceptional contribution at Bishops Croft during the month of May, covering many extra shifts.

It should also be noted that Richard Vint from Bishops Corner and Caroline from Bishops Croft attended the holiday with Duncan and we would like to express a special thank you for their input on that Service User Holiday.

On spring bank holiday Monday a fund raising event took place at the Clarence Public House in Silverhill Hastings. An incredable total of £600 was raised in aid of the Prader-Willi Syndrome Association. There was a photo opportunity with the Hastings Carnival Queen who has nominated Prader Willi Syndrome as her nominated Charity. There was a raffle, horse racing on DVD, killer Pool Competition, BBQ, sunshine and fun. The Girls Out Loud Dragon Boat Team were in attendence they are participating in this years event to raise money for Prader Willi Syndrome. Their aim is for the 22 team members to raise £100 minimum each. At least 5 members have achieved this so far.  http://www.justgiving.com/girlsoutloud-pwsa   

Our thanks go to those who sponsored and donated raffle tickets: Terry the landlord who supplied booze, P A Fisher&Son Butchers of Silverhill £25 meat voucher, Battle Golf Club round of Golf for 4, Hair Dezine St. Leonards Hair voucher, Indian Restaurant Robertsbridge £20 meal voucher, Fruit & Wine Basket from Mr & Mrs Lowe and New Directions for supplying raffle prizes and BBQ food.

Pictures to follow