Volunteering for stroke research

David Karpin discusses his relationship with NeuRA research from contrasting perspectives as a volunteer and a NeuRA Foundation board member.

Five years ago, as I was sitting watching the morning news, I fell off my chair to the floor. Within the hour I was in hospital, having suffered a severe stroke. Afterwards, I could not walk, speak clearly, or use my left arm or hand. I was totally reliant on other people. My neurologist advised my son I was unlikely to ever walk again.

David practices rehabilitation exercises using the Wii.

David practices rehabilitation exercises using the Wii.

Today, I live independently and can speak clearly, walk unassisted and have partial use of my left arm, hand and fingers. My remarkable transformation is thanks to medical research and in particular to my participation in a stroke rehabilitation study at NeuRA. Using the Nintendo Wii as a rehabilitation tool, this groundbreaking research is translating into results for stroke patients right now, some of whom I introduced to the Wii trial after my own positive experience.

I am now heavily involved in NeuRA activities as a volunteer, donor and NeuRA Foundation board member. The Foundation seeks philanthropic support from different groups and individuals with differing preparedness to give, and I assist with this by sharing my extensive experience in executive administration and management. The overall aim is to enhance the benefits for both the individuals and groups who fund research and also for those who stand to gain meaningful benefit to their lives from research outcomes.

In addition to management experience, good science communication is important in seeking research funding. In addition, it is important to highlight the economic disadvantage of neurological illness to society due to healthcare burden and reduced workforce participation. Many philanthropic partners prefer to support research that translates interventions into clinical practice, and I am glad to say that translational research is an area of strength for NeuRA.

NeuRA has a strong base of ongoing research across a whole array of neurological illnesses. With sufficient funding, we hope it will be possible in future to take on additional areas that have historically been under-resourced but are very important.

I remain involved as a volunteer for a trial being run by a PhD student in the McNulty lab. It is my fervent wish that NeuRA’s research continues to be funded, as it delivers real and very tangible results to the community. Hopefully, you will be inspired to also lend your support. Much more needs to be done to achieve NeuRA’s vision of a society free from diseases and disorders of the brain and nervous system. I hope you and many others will share this vision.

A ride for my Dad

NeuRA volunteer Lizzi Mallett explains why she decided to participate in the Memory Cycle to Cambodia in March 2015 and why fundraising for NeuRA’s research is so important to her.

Six years ago my family and I said goodbye to my dad, John Mallett, as he slipped away from our world after suffering from the rapidly progressing motor neurone disease (MND) and frontotemporal dementia for five short years. His battle with these awful diseases started when I was 15 and he was only 58. He lived life each day as if it was his last. His thirst for life took us on a wild journey and he loved every second of it. It is because of my dad that I have decided to dedicate my life to supporting and helping NeuRA. At the beginning of the year I moved to Sydney from Perth and began volunteering with NeuRA’s Foundation team.

When the opportunity for the Memory Cycle came up, I thought that there was no way someone like me, who doesn’t cycle regularly, could do a challenge like this. We would be cycling from Vietnam to Cambodia, and I would have to fundraise a minimum of $3,500 while living on the other side of the country from my entire support network. However, my mother reminded me of my dad’s determination in life and how he purchased a bike when he was ill but could not ride it. He taught me that if I put my mind to something, that I could achieve anything! And by *anything*, I mean the time he sneakily planned a trip from Perth to Hampton Island all on his own when he had already lost the ability to speak and swallow – however, that’s a story for another time. With this determination in mind, I thought, ‘yes, I can do this, I’ll cycle for my dad’. After all, Dad was the one who taught me how to ride a bike and we used to do everything together. This is something he would like to have done and if he was still here with us today, I’m sure he would have signed up for the challenge too. So I signed up and started my fundraising page. Almost instantly, thanks to social media, I raised $1,000 in under a week. Whoa!! Who knew I could do that. I am extremely close to reaching my minimum fundraising goal. See, my dad was right! The mind works wonders; you can achieve anything when you put your mind to it. The Memory Cycle is the best way to fundraise for NeuRA as I get to travel, meet new people, do really cool things with the Inspired Adventurers, and work out, all at the same time.

I had an unbelievably close bond with my dad and it breaks my heart seeing people suffering from neurological diseases just like he did. If you have a desire to help NeuRA and make a difference to so many families suffering from the illnesses that NeuRA researches, then please donate or sign up for Memory Cycle and ride in Cambodia with me. We will have an absolute ball! If you would like to contribute and cannot join the cycle team (even though you really want to!) then you are more than welcome to give a little donation on my fundraising page, and follow my journey on my blog.

I hope to see your pretty little faces on NeuRA’s Memory Cycle team; otherwise, we appreciate every little cent that comes our way. NeuRA is making a huge difference to so many people’s lives, including my own family. Your donation will help NeuRA conquer neurological disease one step at a time.

Dad and I

Dad and I

 

Providing for the future

Why is it that Australians prepare fiscally for retirement, but do not routinely donate to research into diseases of brain and mind, which will affect many Australians during their retirement?

DSC_3155Many people begin to take an active interest in preparations for retirement at some point during their adult life. Obligatory employer contributions make it possible to begin superannuation savings early in working life, and additional voluntary contributions are incentivised by tax benefits. Many people feel a sense of pride in this financially prudent approach to the future, and are able, at the end of a productive working life, to approach retirement with a safety net or a cushion; in short, some degree of financial security that will provide necessities as we age.

Ageing, however, cannot be dissociated from rising health costs and an unknown degree of necessity to rely on others to cope. There are more complex factors in how we allocate our financial resources when approaching older age that need to be taken into consideration.

There is a conundrum here: people make provision for an active, healthy and fulfilling retirement; however, they often do not consider donating to research and development in areas of health that are relevant to ageing populations. Many donors to biomedical research may be drawn to illnesses more prevalent in younger people, such as childhood cancer or breast cancer. Nevertheless, there remains a brutal reality for older Australians, who face the prevalence of dementia as a major barrier to health and quality of life. More than 320,000 Australians are currently diagnosed with this illness, and this figure is set to rise to 900,000 by 2050. There is currently no cure for dementia or for many other types of neurodegenerative disorders that also affect an ageing population, such as Parkinson’s disease and multiple systems atrophy.

So, when we are in a position in life to contribute to research, why don’t we choose to prioritise donations to research into neurodegenerative conditions, which incur significant costs and will affect an increasingly large proportion of the population?

Perhaps this asymmetry in choice is brought about by fear. Neuroscience research has enabled an increased understanding among the public of the effect of genes on heritable disorders. On the flipside, though, being able to predict one’s own vulnerability to diseases of the brain and mind may be only a grim reminder of a difficult future. Perhaps it is more comfortable for people to suppress this pessimistic prospect by contributing to research programs in which the afflicted individuals are youthful, the organ replaceable or the condition reversible. This allows the donors, who may often be facing middle age or older, to distance themselves from the fear that comes with increased awareness of their own vulnerability and to feel that they are making an effective difference through supporting translational research.

It is crucial that we bridge this apparent divide. Greater knowledge of the causes of neurodegenerative illnesses, and a more productive search for cures, can have positive feedback. In short, successful research often begets greater funding.

As demands on carers and aged care institutions become more apparent with the sheer numbers of Australians increasingly burdened with neurological diseases, the public will demand a collective reassessment of priorities in research funding from government and philanthropic sectors. The challenge will be to grow the pool of available funds, without diverting them from other areas of priority. Perhaps this challenge is something to consider during financial planning for retirement.


 

Books For Brains

The NeuRA Foundation is looking to raise funds to support brain research via ‘Books for Brains’, which kicks off in October.

Sometimes an idea just ‘feels right’, and so it was when we conceived the idea for NeuRA’s Books for Brains event.

From the outset, it was clear to us that people who enjoy reading intuitively know that reading is good for their brains. And so the idea that people in book clubs would take a lively interest in the frontiers of knowledge about the brain, and how it works, was not a stretch.

Books for Brains is a NeuRA initiative calling on book clubs around Australia to put their heads together in the month of October and read a book with a focus on the brain and mind.

NeuRA’s Judy Dixon

The concept has received praise from a number of bestselling authors.

Norman Doidge, author of this year’s featured book, The Brain that Changes Itself, says:

“At this moment, while Australian neuroscience researchers are ‘punching well above their weight’ and making huge breakthroughs, so many Australians display an open-minded wonder about the brain. That’s why NeuRA’s initiative, Books for Brains, is such a wonderful idea. What could be more enlivening than digesting the meaning of new findings, which can so illuminate our lives, by getting together and discussing them within your book club – with the helpful, up-to-date comments on offer through Books for Brains from leading Australian researchers at NeuRA.

Ruby Wax, comedian and author of 2013’s bestseller, Sane New World, a story about what is it like to live with depression, says:

“The problem is in us; in our brains. The conflict is within ourselves. It’s those voices battering us and we project it out on the world. Inside our heads there is always war. I totally support NeuRA’s Books for Brains – unless we learn what’s in our heads, we will never resolve our own issues and the world’s.”

Peter FitzSimons, much-loved Australian author and social commentator, says:

 “Books for Brains is a wonderful initiative to raise awareness about an issue growing in importance with every passing year. Once, while playing rugby in France, I was so badly eye-gouged I actually saw my own brain, and was satisfied it was big. But as time has gone on, I have become aware that none of us can take brain health for granted, and I fully support all efforts to make Australians aware of that very fact.”

Through NeuRA’s Books for Brains, we hope to encourage your book club to think about the importance of brain research. We want to encourage you to discuss one of our suggested books and hope that you find it stimulating, uplifting, funny or even moving.

To register and access this year’s book list, visit us here.