Posted - June 2012 in HSPRF News
Local publicity for raising HSP awareness
Get-together and BBQ
Lesley Matheson, a member of the HSP community, hosted a social get-together and BBQ at her place in February for HSPers from south and western Sydney, as well as friends and neighbours. Flowers were auctioned, and overall, $1000 was raised to help fund HSP research.
Lesley was also the subject of a newspaper article about her particular type of SPG4 – never having been found previously – a brand-new mutation. Here is the article reproduced in full from the St George and Sutherland Shire Leader.
Rare disease type first case recorded
BY DEBORAH FIELD
20 Mar, 2012
LESLEY Matheson, 52, of Loftus, has become the first known person in the world to be diagnosed with a rare type of hereditary spastic paraplegia (HSP).
HSP is a group of genetic degenerative disorders of the spinal cord characterised by progressive weakness and stiffness of the muscles. It causes loss in mobility and has no-known cure.
Mrs Matheson and her doctors have no way of knowing if, or when, she will require a wheelchair. Management is focused mainly on reducing and controlling symptoms, which include repeated tripping or falling, abnormal manner of walking (gait) and rigidity.
Mrs Matheson has been experiencing symptoms for about five years and already uses a walking stick. She is on the same medication prescribed for people with Parkinson’s disease and is given botox injections to relax the muscles in her feet.
HSP in itself is a rare group of disorders. According to Mrs Matheson’s specialist, her particular variant of the disease “has not been described in literature elsewhere”.
“It is just a terrible, cruel disease,” Mrs Matheson said. “Everything is more difficult to do.”
Mrs Matheson has taken time off work from Engadine Post Office in preparation for a special pair of leg splints she hopes will make walking easier. Her husband Bob has taken work leave to help his wife.
Mrs Matheson wants to raise awareness of HSP and recently held a fund-raiser for the HSP Research Foundation, an Australian charity formed in 2005 to help provide research, support and education for people with the illness.
Sufferers require walking sticks, walkers or wheelchairs to get around.
Rare Disease Day was held nationally on Wednesday, February 29.
Golf Day Fundraiser
Peter McCosker, a member of the HSP community, took the initiative to organise a social golf day at his club and raise awareness of HSP, and funds for HSP research. $1,000 was raised on the day.
Peter says the members of the Club are very supportive of him in what he does for the Club in preparing competition cards for the Seniors and Masters events during the year. When playing himself, they are complimentary in their comments of “how I can play the game with my silly legs?”. He says this makes him try even harder to acknowledge their support.
In acknowledgement of Peter’s efforts and the Pine Rivers Golf Club in Brisbane’s north, Foundation committee member Ken Price recently presented the club with a Certificate of Appreciation and a letter of thanks for the support of Peter and HSP research, at an event at the club attended by 50 members. On behalf of the club, Alan Himstedt, Life Member and former Club President, said he hoped the club would be able to hold a similar fundraising day for Peter again this year.
Well done Peter and thanks to you and all at Pine Rivers Golf Club.