The women who have made a difference to people's lives (From Wharfedale Observer)

The women who have made a difference to people's lives

2:56pm Thursday 5th June 2008

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When Louise Hanen's father developed dementia in his early 50s the family were shocked at the lack of support available to them.

He died six years ago but his legacy lives on in the shape of a charity which has raised more than half a million pounds and has helped bring hope to those hit by dementia and to their families.

“We are making a huge difference to their lives. We have changed people's lives, without a doubt, and not a single penny has been wasted.”

Louise Hanen

When the group of friends set up the Acorn Committee they also pledged to raise money for research into scleroderma - a potentially fatal disease of the immune system which one of their number suffers from.

Now nine years later they have provided help to countless dementia sufferers and they are giving vital support to a specialist scleroderma clinic in Leeds.

That the group of friends should have achieved so much is remarkable, and their hard work has received praise from many quarters, including a specialist at the clinic.

Louise, 46, of Castley, described how her father Luc's early onset dementia had proved the initial catalyst for the formation of the group which has gone on to raise more than £500,000 with a series of fundraising events, including golf and tennis tournaments, balls, bike rides, half marathons, Christmas and Easter fairs and coffee mornings.

When the successful businessman was first diagnosed with Alzheimers at the age of 55 in 1993, the disease was already well advanced. But his wife and three daughters ensured he received the best possible care and quality of life at home.

But when he needed to go into respite care in 1999 Louise was horrified to discover the lack of help available for people with early onset dementia.

And she decided to do something about it.

"I got my girlfriends together and said would they like to organise a fund-raising committee. I was prepared to see what they wanted to do and to try to make a difference locally."

At the same time she was introduced to Maria Dawson, now 43, of Ilkley, who had been seriously ill in intensive care after a virus sparked the incurable scleroderma.

The group of about 12 friends, including Maria, voted to raise money for Alzheimers sufferers and their carers in Ripon and Harrogate and for Scleroderma at the LGI in Leeds - two causes which they describe as close to our hearts'.

And they have been taken aback by the long-running success of their fund-raising.

Louise said: "When my father was diagnosed there was nothing there and yet 15 years down the line in Ripon and Harrogate now we have a choice of services. I thought we would offer a service but I never imagined we would offer a choice of services."

Each year the committee takes a vote on whether to continue raising money for the two causes and each year they have decided to carry on with the work which is making a difference to so many people's lives.

Among the services they have set up are support groups, and befriending services. In particular, £30,000 raised by Acorn attracted Lottery funding of an additional £460,000.

At the moment Acorn is supporting just under 300 families in Ripon and Harrogate where a family member has dementia. They also give to the local branch of the Alzheimer's Society and to the Primary Care Trust to set up a service for younger people with dementia.

Louise said: "We are making a huge difference to their lives. We have changed people's lives, without a doubt, and not a single penny has been wasted."

Social events such as a luncheon club and tea dances can prove a lifeline for dementia sufferers and their families who can feel increasingly isolated and unable to go out.

Very often going to public places such as restaurants can seem just too difficult for people with advanced Alzheimers - and the social life offered through money raised by Acorn can make a massive difference to their quality of life.

"People are coming when the disease is advanced because they feel comfortable and are surrounded by people who support them," Louise said.

This in turn enables the carer to continue with a more normal life.

"Very quickly people don't go to restaurants any more," she said. "But you have to make life as normal as possible."

"When I have families saying to me we are thinking about taking him to visit family in America, I say - go do it."

Helping families to achieve as normal a life as possible also helps to reduce the burden of guilt which many relatives suffer.

In the case of Louise's father the family had ensured that he had been able to get the most of life for as long as possible.

"I have no regrets, and we have no guilt," she said. "People do carry around a huge amount of guilt. I would like to think that we help alleviate that guilt."

And Acorn is also making a valuable contribution into reasearch into scleroderma.

Dr ( PLEASE CHECK NAME) said the disease was rare and had been misunderstood until recently.

He said: "It may affect multiple systems, including the skin, joints, gastro-intestinal tract, lungs kidneys and heart. Furthermore, many of these problems are resistant to standard therapies.

"This makes it a very challenging disease for rheumatologists to treat. We have been tackling this problem with a specialist scleroderma clinic in Leeds that has been made possible due to the support of Acorn."

He said the rheumatology clinic in Leeds had been relocated to a new, much larger and better equipped department in Chapel Allerton Hospital. This department is now a European League Against Rheumatism Centre of Excellence - one of only five in Europe.

He says: "Acorn have funded a dedicated scleroderma research fellow who sees all sceroderma patients and is collecting a database of these patients. The Acorn Room' provides facilities for capillaroscopy ( a technique used in the diagnosis of scleroderma), and specialist eye care."

Other facilities at the centre include ultrasound, MRI and bone density scans.

He said the facilities at the centre were also used to conduct trials of new therapies in scleroderma.

"These currently include a trial of a novel therapy for skin disease, a new type of treatment for Raynaud's Phenomenon ( a circulatory problem in scleroderma) and, for patients with the most severe disease, the potentially life-saving treatment of stem cell transplant."

Maria stressed that because it was such a centre of excellence people came to it from all over Yorkshire.

And she said the fund-raising was making a very real difference.

Maria said: "We can just see the difference that the money is making now."

Louise said that even the half a million raised had also led to other funding - with £30,000 from Acorn going on to attract a further £460,000 in Lottery funding.

And she stressed the important contribution made by everyone who had worked on the committee.

She said:" It is all-consuming. But you get huge rewards from it. I have been very fortunate to have the support of my husband and family. And the Acorn committee are a phenomonal group of women who give their unconditional support in everything they do."

"I always say it is a great example of what you can achieve with teamwork."

She added: "I have had a very interesting ten years and it has changed my life.

"I am very proud that something good has come out of something so terrible.

Louise can be contacted on 01423 734876, or at PO Box 101, Otley. LS21 2WA. And the group can be accessed on the internet at www.acorncharity.org.uk Acorn is holding a tennis tournament at Ilkley Tennis Club tomorrow, and they are inviting anyone interested to go along and watch.

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