Research funding for Multiple System Atrophy

Update posted by Mark Voerman On Sep 05, 2015

Imagine if your Mum, Dad or Partner, slowly develop a stagger in their walk, find it difficult to get on or off a escalator, need a handrail to get up and down one or two steps. Then they have difficulty getting in and out of a chair or feel faint afterwards.

These are some of the early symptoms my wife experienced that lead us on a search for a diagnosis and that is your first hurdle, Most general Doctors will never have heard of MSA, Most Neurologists have no or only minimal awareness and the current reality is that the only certain diagnosis is after your loved one has passed away, before then using a series of tests your Doctor will diagnose probable MSA.

Incontinence became a issue, her hand-writing which was so beautiful became smaller then barely readable as she lost control of her hands.

Losing the ability to walk or being able to feed herself coupled with her limbs stiffening and being constantly in pain, forcing her to be bedridden. Muscle spasms and rigidity forced her to have a constant lean to the left with her head. Her voice disappeared and her eyesight began to fail. All the while, her sense of feeling, her ability to hear, remember, comprehend and understand all that was happening was both a mixed blessing and a cruelty.

All of this occurs gradually. For my wife's 5 years after a 2 year period before we had a answer to her deteriorating health and there are no effective treatments to slow or eliminate these problems. Pain Management is the only effective option but it in itself creates problems.

MSA itself will never be your demise its the secondary issues that arise, pneumonia, septicaemia or something else will be.

Paula was so determined that in the future MSA sufferer's, families and friends would have some hope or treatment, she insisted on supporting the research by doing the only thing available to her, donating her organs to medical research and giving me strict instructions to ensure research continues through helping others and supporting research.

This is a truly hideous condition and while the sufferers are small in number, the effect on their families and friends is large and all deserve to have some hope that a treatment will be developed or a cure is eventually found. The current research programs have made great steps forward and will potentially help other neurological dis-orders such as CJD or MND. Please consider donating and giving a glimmer of hope.

Add a Comment

Update posted by Mark Voerman On Sep 03, 2015

September 4th marks the 3rd Anniversary of my Wife's passing from Multiple System Atrophy and this campaign is to satisfy her number 1 item on the bucket list she left me, that is to ensure other sufferers of MSA do not feel the same sense of hopelessness she felt. Only through Research will people diagnosed with MSA get a proper diagnosis, some form of Treatment and hopefully one day a cure. Thank you for visiting and hopefully donating.

The logo on the Keyring is made up of a Gumleaf and Gumnuts representing Australia and the Silver Fern iconic to New Zealand. Both are joined together just as these to nations tend to join together when battling a common foe (the ANZAC legend). The colour Purple is used as it is the colour adopted by a group of MSA self help groups around the world.

Add a Comment

Donate $12.00 Or More

Key Ring as shown

7 Backers

photo

J & J 0' S

Mandy Batey

Backed On Sep 14, 2015 Amount Hidden

photo

Mandy Batey

Backed On Sep 14, 2015 Amount Hidden

photo

So grateful that you are raising money for this invalubale research.

Marion Campbell

Backed with $200.00 On Sep 08, 2015

photo

an important step towards awareness - well done

C. Rustichelli

Backed On Sep 08, 2015 Amount Hidden

photo

Thanks Mark,keep up the good work, we need a cure for this debilitating illness

Rose Thomas

Backed On Sep 08, 2015 Amount Hidden

photo

Julie Beus

Backed On Sep 06, 2015 Amount Hidden

photo

Ms Suzanne Farrell

Backed with $60.00 On Sep 05, 2015

photo

Cathy

Backed On Sep 04, 2015 Amount Hidden

photo

Jade Farrell

Backed with $30.00 On Sep 04, 2015

photo

Great job Mark.

Mandy Batey

Backed On Sep 04, 2015 Amount Hidden

SHOW MORE COMMENTS
Add a Comment

photo

Mark Voerman

send a message

photo

Rose Thomas

Following Since Sep 08, 2015

photo

Mandy Batey

Following Since Sep 04, 2015

photo

Cherie Miller

Following Since Sep 03, 2015

photo

Kelly Voerman

Following Since Sep 03, 2015