Raising funds and awareness of rare disease

Liz Holland is fundraising for PSPA SUS-150309-145232001

Liz Holland is fundraising for PSPA SUS-150309-145232001

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A Seaford woman whose mother-in-law suffers from a rare brain disease is celebrating a successful summer of fundraising activities.

Liz Holland is raising funds and awareness of PSP, which is a Progressive Supranuclear Palsy which is a terminal rare brain disease.

She told the Gazette, “PSP is caused by the progressive death of nerve cells in the brain, leading to difficulty with balance, movement, vision,speech and swallowing.

“PSP is associated with an over- production of a protein called tau in certain areas of the brain.

“The average life expectancy from onset of disease is seven years.

“People with PSP are initially misdiagnosed and often repeatedly misdiagnosed with other conditions.

“There are no effective treatments for PSP.”

In early August Geoff Stonebanks of Driftwood, Seaford, opened his garden up to raise awareness and funds for PSPA.

Liz added, “We had a wonderful afternoon meeting visitors.

“We sold raffle tickets and plenty of tea and cake was enjoyed in Geoff’s beautiful garden.

“We raised an amazing £310 and are very grateful to Geoff.

On August 24 Sally Evans, the leader at Liz’s Weight Watchers group, helped Liz with a fundraising morning.

There was a raffle, cake stall and unwanted clothes, handbag and jewellery sale to bring in the funds. The morning meeting raised £246.66.

The ladies from the Weight Watchers group all wore pink for the fundraiser.

Liz said it had been a brilliant summer of fundraising and she has raised £556.66 in just a fortnight, and added, “This means so much to me as my mother-in-law has been in a nursing home for the last 18 months. Unfortunately this will not help my mother in law as her health is deteriorating rapidly but hopefully it will help others.

“Her days are spent in a darkened room, in her bed. Her food is pureed as she is choking an awful lot now.

“The chances are she will choke to death. This disease is horrible therefore I just want to raise as much awareness as possible so people are aware of it.”

More fundraising events are planned for next year.

M&Co in Seaford will hold a fashion show and Liz’s friend Linda Wallraven is going to do an afternoon cream tea to raise more money and awareness.

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