HSP community giving in 2017

Yikes, what just happened!


. . .

The fundraising gauge on the website homepage tells a sad and sorry tale of fundraising in 2017. Just $56,000 was raised over the course of the year… Less then 50% of the target of $120,000! Firstly, we are sincerely thankful and grateful to those who contributed to the $56,000 total, but this article is not about those who gave, but rather…  those who didn’t. Help us understand what is going on – we need your feedback!


In 2016, almost $140,000 was raised, well over target, but the wind has gone totally out of the sails over the last 12 months.


With over $300,000 committed to preclinical trial investigations this year, and income that is $240,000 short of that, this leaves a big hole in the budget.


We are not sophisticated with our fundraising, unlike the larger, professional charities who have slick marketing and communications platforms to reach their audiences and ‘sell’ their charities to the general public. Is this the problem? Are our email communications on fundraising missing the mark? Would you rather have a text message to your mobile phone to encourage and prompt you to donate?


It might be that community members have run out of steam, or money, or belief in the HSP research program? If you used to give, but don’t anymore, let us know why.

. . .

We realise, appreciate and understand that many in the HSP community do it tough and don’t have more than living expenses coming in. Having HSP makes it hard to work and has cut short many careers. It is not unusual for a family member to limit their career or moved to part-time work so that they can care for one or more HSPers in the family. This puts on further financial pressure. But we also know that there are lots of community members who are in a position to give and are not doing so.


We have not cracked the code on how to expand the circle of donors beyond the HSP community to the general public. The nearest we can get to that is for you, members of the HSP community, to reach out to extended family, friends, work colleagues and organisations, clubs and individuals in your local communities to seek support. However, it is clear from the results, that overall, not much of that is going on.


Any feedback or suggestions that you can provide on how we can do this better and be more successful in our fundraising would be much appreciated. Email us!



    1. Editor’s Note: Some of the preclinical investigations and the clinical drug trial itself may be eligible for some support funding by the National Health and Medical Research Council. This is the government body that funds medical research in a highly competitive process. Prof Mackay-Sim and his team at Griffith University secured a three-year $500,000 grant from the NHMRC back in 2011 to support the broadening of stem cell studies following the initial breakthrough of nasal stem cells being proved as a reliable and valid way to study HSP. This allowed the employment of researchers and the costs of materials as the cell and molecular causes of HSP were discovered. This funding also allowed the first part of the drug discovery process.

      The NHMRC have very strict eligibility guidelines and much of what was done in the HSP research program before and after the half million dollar grant was ineligible. These days they look very hard at what funding is coming from people who stand to benefit… in this case, the HSP community via the Foundation. They look for, and look at, joint funding and matching funding based on the principle of having ‘skin in the game’ – risking public money investment in research where those who stand to benefit directly are also risking their hard-earned cash. Long gone are the days of the government research handout.

      Rest assured that whatever can be done to get support funding from other sources is and will be done, but the chances of securing such funding is greatly enhanced by the visibility of enthusiastic investment coming from, or through, the HSP community. We seem to be now falling short on this test on two fronts – the modest giving result for 2017 and the inability to secure giving from outside the HSP community by the people, clubs, associations, community groups and corporations with whom we are all involved.

  1. Is there not some sporting teams that would do so much for disabilities, cricket takes on breast cancer, what about some of our football teams, Brisbane Broncos plus all the others all over Australia, they always seem to be doing things for charities, have any of these been approached. Is there a company who would run an art union for a house, cars or holidays, like the deaf society do. Just wondering if any organisation have been approached.

    1. Editor’s Note: What is needed is community members prepared to take the initiative, to create opportunities and then pursue them. Unfortunately for a rare, relatively invisible condition such as HSP, getting exposure and the interest of sponsors has proved difficult. It will take grassroots advocacy from community members, especially at the local level where there is already some connection, to get clubs and corporations interested. Corporations sponsoring charities is a business these days – they ask “how much favourable publicity can we get from being associated with this charity/condition?” In our case, it appears the answer is “not enough!”.

      When Prof Mackay-Sim became Australian of the Year and in his year in the role, whenever he was asked, he encouraged people and corporations to help fund HSP research. In one such case, the Foundation was approached by a national food distributor about becoming a sponsor… their questions were answered… And the Foundation heard nothing further from them. Companies are scrambling to put a breast-cancer pink ribbon on their websites or letterheads… And pay at least $100,000 for the privilege. The high profile professional charities get richer… And the tiny ones, like us, can please themselves!

      Remember that there is no fundraising manager in the Foundation; there has never been professional level support for Foundation fundraising; it is just a few volunteers sitting in their home offices doing what they can.

  2. I will stick the fingers down a bit deeper in the tight jeans pocket and see what extra I can find, or maybe have a look in the corner of the bank book.

  3. we are half a million sick. oh, if everyone had sent at least a dollar, we would have provided a lab for a few years ahead with money. I will send as much as I can. we are all very much waiting for the means for treatment. Thank you very much for your hard work and efforts.

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