Practice What You Preach, Fundraising Team!
…So.
As a fundraising team we are always trying to come up with new and exciting ways to tempt you lovely supporters into raising funds for PSP….and this year we concluded that we need to take one for the team. Lead by example. Show everyone how it’s done.
Team PSPA prepares to Run the Night!
So we signed up for the Energizer Night Race, a 5km run though London on April 13th…and now the panic has set in!
Thinking we were leading by example, we have swiftly realised our mistake – primarily that none of us has ever run before. One of us even stated that she would rather miss the train than run to catch it.
So we need you to show us how it is done. Please! We need you to cheer us round the track and drag us along whilst we struggle, out of breath and limping along the route round Battersea Park. And then we want to have a big party to celebrate how much we have raised for PSP!
Oh, and we will be running in the dark, because the Night Race takes place after sundown so everyone will be provided with a head-torch, and the 5km or 10km route ends with a red carpet finish and an epic evening of entertainment at the after-party! Sound like fun? (Not the running part, obv.)
Will you join us?
Sign up NOW (please!) We can’t do this alone! http://energizernightrun.co.uk/
Join Team PSPA for the Night Run!
Registration is £30 and there is no sponsorship target – whatever you manage to raise will be gratefully received and will all be put to good use for those affected by PSP.
We will provide you with all your fundraising bits, the organisers will provide your head-torch and entry to the after-party with a free drink, and it will be the perfect way to lead into PSP Awareness Week!
So call us now on 01327 356131 or email events@pspassociation.org.uk. Do it!
…And if you cant make it to the race, then you can always leave a donation to PSP on our fundraising page at www.justgiving.com/TeamPSPA
Local Groups offer a vital lifeline – Can you help set up more?
The benefits of having access to a local group can have a real impact on the lives of people with PSP, their families and carers, as the Northamptonshire group discovered when they held their first meeting back in November 2011.
Sue Roberts – whose Mother died of PSP in 2009
The group was set up by Sue Roberts, who lost her mother to PSP in 2009, who felt it would be a good way of using her own experiences to help others.
“When my mother was poorly, I felt very ‘alone’ and although I attended a support group and was able to collect information – to ensure Mum was receiving a good level of access to health and social care – the group was very formal. It didn’t help the feelings of isolation and because of the formality, there wasn’t the opportunity to get to know other attendees.
“Later, when I approached the Association to volunteer my time, they were looking at ways to make support groups more accessible and ‘user-friendly’. So, I offered to be involved in setting-up a group but I did have reservations – I was new to volunteering and found the thought of running a group on my own quite daunting!
“PSPA said they would help me every step of the way and would, if possible, find others to support me. It took 2 months to organise but during that time another volunteer had come along – that made me feel far more confident.
“The first meeting was a bit scary, as we had no idea if anyone would turn up and when they did, how they would feel about this group being run by ‘volunteers’? That query was soon answered, when there were 28 people drinking tea and chatting!
Hand Massage at the Northamptonshire Support Group
“We then asked what people wanted from the group and I was astounded that so many of them wanted the same as I did when I was caring for my mother – less isolation, social contact and above all, somewhere where people in a similar position, can share their knowledge and experiences of living with PSP.
“In the last 14 months, the Group has met on the last Saturday of the month and numbers are never less than 20. We have welcomed local health and social care professionals, including the Parkinson’s Nurse Specialist, and someone to talk about access to benefits. We have also enjoyed some very sociable gatherings and fundraisers where family and friends have come along – these are always fun.
“My fellow group leader, Peter Daniels, and I, have formed a very good working partnership and many of the family and friends of people with PSP also help out at both the meetings and social gatherings. I am so glad that we set up the Group as it is so rewarding to hear what it has meant to members.
“I hope others reading this will be encouraged to get involved in a local support group. I know there is a real need for many more, like us across the UK.”
Wendy Crofts, Volunteer Services Manager at PSPA says, “A key factor to the success of these groups is the willingness of individuals to get together and form the focal point. To some, this may sound daunting, but it can be as simple as finding a venue for a meeting – the Association will provide all the guidance and support needed to get the group up-and-running, and in the first instance make sure everyone in the area receives information on the meeting.”
Wendy is committed to supporting anyone who is interested in setting up a local group. “Every group is different in terms of size and format, as it depends on the needs of its members. I am keen to make sure we do everything we can to ensure volunteers receive support, from the moment they contact the PSPA. We need to get more groups, that means more volunteers – can you help?”
If you are interested in setting-up a support group and would like to chat informally about what is involved, please call Wendy Crofts on 01327 356134 or email wendy.crofts@pspassociation.org.uk
PSP is the Focus of Parliamentary Debate
PSP was the focus of a parliamentary debate at Westminster on Wednesday January 23rd.
Andrea Leadsom, MP for South Northamptonshire led the 30 minute debate in support of the PSPA, which was attended by members of the public and supporters of the PSP Association, MPs and Norman Lamb, Minister of State for Care and Support.
Ms Leadsom spoke about the nature of PSP, the work of the PSP Association and the importance of ensuring that the needs of those living with PSP are met as part of the forthcoming health and social care reforms for England.
Fergus Logan, Chief Executive of the PSP Association, said: “By raising a debate about PSP in the Houses of Parliament, we have highlighted some crucial issues faced by people affected by PSP around the country.
“We are delighted that government is picking up the cause. PSP is a relatively rare disease but the speed of its progression and the way it affects people’s abilities means people with the condition have very unique needs. It is vital that those needs are understood and met by the health and social care services, and highlighting them at the time of a healthcare reform gives us every opportunity to ensure PSP isn’t forgotten.”
Read the full content of the debate here.
Health and Social Care Reforms are due to begin this Spring.
These reforms will have an impact on all NHS services and as such, on the needs of people living with PSP. We must ensure that the needs of people with PSP are fully understood and considered in the proposals for health and social care reform, and in the commissioning of services at a local and national level.
We must build on the momentum started by the Parliamentary Debate.
Guest Post – Belfast Support Group
In the last edition we were bemoaning the fall of attendance at our Belfast Support group, but we are happy to report a complete turnaround!
In September at our Belfast support group we had a number of new members arrive who felt they had been greatly encouraged.
We also sent out invites to a support meeting in Ballymoney which was held in October. We had a very successful meeting which will now become a regular event every couple of months.
News has spread, and a consultant in another area has asked if we might set up a support group for his clients, probably in Craigavon or Dungannon. This will take place in the spring. We are quite happy to go where needed and now suddenly we are needed in all parts!
A Nursing Home has also been in touch to ask us to receive a cheque which they have collected as sponsorship for a sponsored fancy dress walk.
Two members of the group, Doris and Fiona, took part in a workshop run by the Royal College of GPs, on patient passports. There were a lot of senior medical people in the room, so it was good to be able to represent the needs of PSP patients and families.
We continue to work with the NI Rare Disease Partnership- recently Fiona attended meetings with the Health and Social Care Board, the Department of Health, Social Services and Public Safety and the Public Health Agency- to help raise awareness of the needs of patients with rare diseases and neurological conditions. Let’s all hope and trust that PSP will be recognised more readily.
For more information on the Belfast Support Group contact Doris Mason on doris.mason@btinternet.com
Next Meeting: 17 February 2013
New Year’s Aspirations
Happy New Year! For our first post of 2013 we will be featuring the aspirations of some of our supporters, members and staff, and their hopes for the coming year…
Sue Wilson, 58, from Northampton was diagnosed with PSP in 2010. Sue is an active fundraiser for the PSP Association and in 2011 set herself a goal of raising £1,000 by 2016 for our charity. Her efforts in 2012 proved so successful she has started 2013 by doubling that target to £2,000.
“My biggest aspiration for 2013 and beyond is to find a cure for PSP. I also hope more people will discover the benefit of shopping online via everyclick.com where you can raise money for PSP whilst shopping at most high street retailers.”
Everyclick is a search engine which donates funds to charity with each search – You can visit Sue’s webpage and follow her PSP journey at http://www.everyclick.com/suewpspjourney
Fergus Logan, Chief Executive of the PSP Association, has been heading up the charity for the past two years. Following a nationwide survey of people with PSP in 2011, last year saw the launch of the Association’s Care Pathway for PSP, a guide to the standards of care and best practice for those working with and providing services to people living with PSP and CBD.
“Our great aspiration for 2013 is that we should be in touch with everyone in the UK who is affected by PSP and CBD and that they should all have access to the standards of care we have identified.
“You can find out more about our Standards of Care and the Care Pathway for PSP on our website.”
Hannah Daykin, 22, from Nottingham lost her dad to PSP last year after a six year battle. Hannah has been actively raising awareness of PSP since her dad’s diagnosis. Last year she was chosen to carry the Olympic Torch in Sheffield, gave interviews on PSP with the BBC World News and was also the focus of our hard-hitting film on life with PSP.
“I am keen to continue my awareness raising in 2013. Losing my dad in September 2012 has spurred me on even more to emphasis the need for research into PSP so no other family has to go through what we’ve been through.
“I’m planning to organise a music event to raise money for research into PSP and I have also been offered the support of a local radio station in Sheffield to help spread the word about PSP.”
Along with her dad and other members of her family, Helen Fuller, 49, from South East London helps to care for her mother Betty, who was diagnosed with PSP in 2009.
“This year I will be celebrating my 50th birthday, and to mark the occasion I will be raising funds for the PSP Association by holding a vintage tea party. I’m also planning to do a bike ride from London to Brighton with my sister. We have both taken up cycling again in the last year after a long break so it will be quite a challenge, and if all goes well I’m aiming to undertake Edinburgh to Dublin and London to Paris in the future.
“I was so disappointed to read the results of the Davunetide trial so my ultimate dream for 2013 is for an effective therapeutic treatment for PSP.”
Davunetide Trials Prove Ineffective as Treatment for PSP
The PSP Association regrets to report that the clinical drugs trial using Davunetide as a treatment for PSP has unfortunately failed to produce successful results.
Allon Therapeutics, the pharmaceutical company behind the study, said the results of the trial failed to demonstrate efficacy in the patients who took part, in other words the drug had no effect.
Fergus Logan, Chief Executive of the PSP Association, said: “We are extremely disappointed to learn this trial has failed, not only for those people who took part in the study, but for everyone who hoped Davunetide would provide a drug that had a real impact on the effects of PSP. It is devastating news.
“The PSP Association continues with its commitment to funding and helping to facilitate research into PSP and CBD, and in particular to developing a national PSP Research Network to help increase the number of patients UK researchers are in contact with.”
The Davunetide study involved 313 people diagnosed with PSP across the USA, Canada, the UK, France, Germany and Australia.
Easy to swallow Xmas Dinner recipes
Are you looking for ideas for easy to swallow, appetising meals for someone you care for this Christmas? Then look no further. Our freelance chef Sven, who some of you may have met at our recent Family and Friends Day, has come up with some fantastic festive feasts that are not only easy to swallow, but easy to prepare as well. Read on for a host of culinary delights that will wet everyone’s appetite this Christmas….
“First thing’s first… Don’t hesitate to cheat in the kitchen if it saves effort and allows you to spend more time with your friends and family. Supermarket shelves are full of good quality, ready-to-go items that require just a little effort to adapt them to our needs. Read the rest of this entry
From Online Auctions to Cow Patty Blocks – Get Involved in the Fun!
We’ve lots of ways our kind supporters can get involved in raising funds for PSP – just check our “Support Us” page here – but we’re always on the lookout for more. With this in mind here are 6 seasonal ideas that might just spur you on to get creative amongst your own communities whilst at the same time helping the PSP cause.
Online Auctions. Everyone’s being encouraged these days to clear out the attic and sell unwanted goods – particularly if they need the room for Christmas presents! Why not encourage your neighbours to let you sell their surplus items via Ebay, with the net proceeds going to PSP?
Calendars. Ok, it takes some courage to bare all, but with a little imagination your clothes can stay on. With the New Year approaching, try a variation on the “Calendar Girls” theme by getting your friends and neighbours to don seasonal fancy dress. For ideas check out http://www.createcalendars.co.uk
Wine Tasting. So, it’s Christmas, do we need an excuse? Wine tasting events can be readily arranged through a local wine shop/distributor.
Worm Charming. We love these US imports! One for the spring, worm charming involves teams renting small “blocks” of land and attempting to “charm” as many worms to the surface as possible, by tapping sticks driven into the soil. Follow up with Cow Patty Blocks, where you use the same blocks of land, add a friendly cow, and award prizes to renters of the blocks that receive the cowpats!
For help in organising your own fundraising event, contact us at https://www.justgiving.com/fundraising-page/creation/event-selection?pcid=f094382f-0ea2-4854-8597-6e372113e14c
New Fact Sheet explains Health & Social Care Professionals roles
An information sheet aimed at helping people to understand the roles of different health and social care professionals has been launched by the PSP Association.
The fact sheet, entitled “External Health and Social Care Professionals – Who are they and how they can help” has been devised to alleviate some of the confusion people living with PSP can experience when trying to navigate their way through the labyrinth of health and social care services. Read the rest of this entry
Lord Coe’s ‘Journey to 2012’ raises £200,000 for PSPA
Team GB athletes, television personalities and icons from British fashion and business gathered at The Dorchester on London’s Park Lane on the 16th of October, to support Lord Coe in his first major fundraiser for the PSP Association.
Sir Michael Parkinson recreated his popular Saturday night show live at the event to interview Lord Coe about his ‘Journey to 2012’. Among the audience were Lord Jeffrey Archer, Sir Philip Green, Emeli Sande, Daley Thompson, Steve Cram, Duncan Goodhew, David Gandy with girlfriend Sarah Macklin, Wendy Smith-Sly, fashion design duo Antoni & Alison and Olympic gold medal shooting champion Peter Wilson with girlfriend Michelle McCullagh.
After the interview, Hannah Daykin, who lost her father David to PSP only three weeks ago, took to the stage to tell her father’s story and to share a video and photos recording his last few months. Her speech was met with a standing ovation.
You can watch Hannah’s video at the bottom of the page.
Lord Archer, a longstanding friend of Lord Coe’s, then took to the stage to host an auction that included a private riding lesson with Zara Philips and a special edition 2012 Mini, signed by Lord Coe, Victoria Pendleton, David Weir, Ellie Simmonds, Louis Smith, Anna Watkins and a further nine Team GB athletes. The generous giving helped to raise over £200,000.
Emeli Sande followed with a live performance of Next to Me, Heaven and My Kind of Love. As Emeli introduced her set, she explained that she had studied neuroscience before launching as a singer and she knows how difficult it is for people to understand neurological diseases.
Speaking at the event, Lord Coe said: “Some of you might know that my mother, Angela, died from Progressive Supranuclear Palsy at far too tender an age and I hope that tonight will not only raise awareness of PSP, but also raise much needed funds for the charity. PSP is a rare neurological condition and seldom gets the publicity it deserves. Those affected lose their ability to communicate with the world around them, yet cruelly, they remain mentally aware.
Watch Hannah’s video that was shown at the event here:
PSP Association 