Prader Willi Syndrome

Sunday 20^th March was Hastings Half Marathon day - this year we had three participants in this event.  Tamara Gates (Miss Hastings) was running and raised £300 for the PWSA and Sanchia and Gayle walked the course (mainly as our training for the Yorkshire 3 Peaks) but we also raised a further £150 to go into the ‘pot’.  The picture below was taken at the start - pictures at the finish would not really be publishable! 

 

 

What was really brilliant was the fact that all the service users and staff from Bishops Corner came out to cheer us on and made a banner to wave.  Thank you also to all the staff who were watching along the route and cheered, clapped and gave us energy drinks.

 

 

 

 

 

Last Friday (18^th March) Bishops Corner made great efforts to raise some money, half going to Comic Relief and half to go to the total fund raising efforts for 2011 from New Directions to the PWSA.

 

Sanchia dressed up - and Maddie dressed down!!!

 

We do have pictures, but cannot get the permission from one of our brave participants to use them.  Suffice to say, that both ladies made a huge effort and spent the day well outside their comfort zones.  Total raised was £60.

The following is to appear in the national Masonic Newsletters and newspapers local to Hastings  

 

There was a cheque presentation at Bishops Lodge Residential Home in Hastings East Sussex. Bishops Lodge is part of the New Directions group who provide accommodation and support for persons with Prader Willi Syndrome, for information on the syndrome which affect 1:59000 of the population visit www.praderwillisyndrome.org.uk or www.pwsa.co.uk   

 

The Rose of England Lodge raised money at a Charity Ladies night held at the Highwoods Golf Club Bexhill-on-Sea East Sussex. Tony Gates past master of the Lodge and his wife Mandy, who is the Home Manager of Bishops Lodge, chose the Prader Willi Syndrome Association as the benefactor of the night. Jane Hicks, who has a daughter with PWS, and is on the Trustee board of the Association, accepted a cheque for £1300, £600 being match funding from province.

 

Jane thanked Tony and Mandy for the fund raising efforts of the Lodge. The association are reliant on such effort to meet the needs of persons with PWS which is a rare syndrome.

 

 

Following the Government announcement that the Mobility Component of DLA is to be stopped for those living in residential care homes, we are happy to tell you that the date for this has been put back.  Unfortunately, at this time it is still proposed to stop this benefit, but the date of cessation is now March 2013 instead of October 2012, giving us all a bit more time to carry on campaigning to have this thrown out once and for all.

There have been a large number of meetings over the past few months, mainly due to the funding cuts which are about to affect all of us.   David, Gayle and/or Dave have been busy attending these various Local Authority meetings.  The upshot is that there are going to be cuts, but here at New Directions we are going to do everything in our power to ensure that the quality of service to the service users is not affected in any way.  David and Gayle are off to Derby for the meeting with the PWSA on 15^th March, and will give a report after that.

Fund Raising 

 

There will be a fund raising race afternoon at the Clarence public House in Silverhill St Leonards this Sunday (6^th March).  All proceeds will be going to the PWSA and will form the total after the 3 Peaks Challenge in June.  Look out for more fun fund raising events over the next months.

 

 

We are also running a ‘book’ on the weight of Nicky’s baby.  Guess the weight for £1, the person who gets the weight correct (or nearest upward if exact weight not taken) will get half the pot, the other half going into the fund raising total.  Loads of other ideas for fund raising coming up!!!

Welcome to Maddie

 

Maddie has now started work in the office to learn the administrator’s role to take over whilst Nicky is on maternity leave.  Nicky’s maternity leave starts from 1^st April (yes she is actually working her last day on April fools day!).

 

Maddie is no stranger to New Directions as she has been working as a bank support worker at Bishops Corner since November 2010.