The Foundation’s funding of HSP research

Looking back and looking forward


HSP stem cell research

You will see in the Research Highlights section of this Winter 2013 edition of the website an interview with Prof Alan Mackay-Sim who leads the stem cell research project and heads up the National Centre for Adult Stem Cell Research.

Having identified some potential drug compounds in the research project just completed, Prof Mackay-Sim talks about the issues with finding cures for neurological diseases like HSP, and also about the pharmaceutical industry that develops and provides the prescription drugs that many of us rely on. He talks about the next phase in the Towards a Cure for HSP research program, titled Testing and Selecting Therapeutic Drug Candidates for treating HSP.

In the interview, Prof Mackay-Sim speaks frankly with an in-depth exploration of the current work, where it is headed, how long it might take, and the potential risks and rewards along the way. Whatever you have been wondering about the research, which is financially supported by HSP community members giving to this Foundation, the answer is likely to be in this interview. Make sure you read it.

It is a timely juncture to reflect on how far the stem cell research project has come. From the baby steps of the Pilot Study initiated in late 2007, the researchers have broken new ground in defining and describing what goes on at the cellular level with HSP. They have created and developed tests and measurement technologies to quantify the important differences between HSP and non-HSP stem cells. Then they set about screening potential drug compounds for their effectiveness in compensating for or reversing the impairments caused by HSP… and came up with some promising candidates.


Progress has been outstanding

We should not take this for granted. This is staggeringly good progress in a field where – rather than success – hurdles, roadblocks, failures and dead-ends are the norm. Such was the level of success that last year the National Health & Medical Research Council of Australia granted $500,000 to these researchers to continue their good work on HSP over a three-year period. This is what has allowed three full-time researchers to proceed in the knowledge that they can continue working on HSP into 2015. We should also not take for granted that uninterrupted success will continue as the research journey unfolds.

But the Foundation still has a role to play in providing financial support to this research. There are not sufficient funds to cover all materials and laboratory consumables used in the research. We provided $100,000 in funding towards this cost in 2012. There are new research initiatives associated with the main research that the scientists would dearly love to undertake and that will require funding. The more funding is available, the faster they can go.

The HSP stem cell research continues to represent an excellent investment for the HSP community.


HSP Mobility Management Research

The Foundation will soon provide $7,600 in funding for a study to identify and measure the common gait abnormalities in adults with HSP. Over the years the Clinical Gait Analysis Service of Monash Health in Victoria have assessed the gait patterns of around 40 adult HSPers so that the most suitable management and treatment options for maintaining maximum mobility could be developed. But collectively, this is a comparative treasure trove of data. By studying and analysing this data, it is hoped that important commonalities in the gait patterns assessed can be identified and measured.

HSP gait has never been systematically or reliably quantified. Clinical management guidelines for HSP do not exist. What this means is that medical professionals have only their assessment, knowledge and experience to draw upon in recommending management and treatment. There is no reliable reference to turn to that could help them understand and identify the critical features of HSP gait enabling more effective assessment, treatment, management and monitoring.

So this research study is a start towards that end. It will be the largest study of HSP gait anywhere to this point.


Research Funding

The Foundation’s fundraising target for 2013 has been set at $75,000. This is down from $120,000 last year for the reason that we cannot expect any philanthropic grant funding in 2013. In this regard, we are somewhat a victim of the level of progress made in the research, it no longer being considered “early-stage” and therefore ineligible for funding from many grant makers. Another factor is that the majority of funds for the stem cell research project at NCASCR now come from the NHMRC and grant makers may well consider that we are less in need of funding than others who have not received such a grant.

Collectively the HSP community gave around $70,000 of the $115,000 raised in 2012. For 2013 we have raised that target by $5,000 or just under 7%. Please help us make that target so that we can fund more HSP research projects in 2013/14.

Whether it is the HSP stem cell research or the HSP mobility management research, you can support this important work for the good of everyone with HSP by giving whenever you wish through this website. Just click here.



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