Community growth, fundraising and research

How they are connected


There is good news for the Foundation on each of these fronts:

  • a scientific paper on the stem cell research project that we help fund has been accepted for publication by a medical journal

  • the growth of the HSP community continues at a solid pace, with numbers recently topping 500 for the 1st time

  • almost $97,000, or 80% of our target, has been given so far this year to fund research.


Scientific Paper

As we approach the end of the current two-year stem cell research project, the research team has been rewarded with news in the last week of November that their scientific paper has been accepted for publication by the medical journal Disease Models and Mechanisms. The importance of this cannot be underestimated. It establishes this work and the team as serious contenders working towards a cure for HSP in the eyes of the research community. It will raise awareness amongst key HSP people globally of the important findings of this research project and build support and momentum to the next stage. It provides confidence to the HSP community to continue investment in this promising work. Finally, it may be helpful in raising public awareness of this little-known condition through media coverage and open new doors for potential support.


Growth of the Community

During the last quarter, HSP community numbers – including HSPers, their families and friends – topped the 500 mark for the first time. Foundation President Frank McKeown said “This is an important milestone for the HSP community that we can all celebrate, as our strength is in our numbers. As a relatively small charity, sustainability equates to achieving a critical mass of support, coupled with ongoing growth.”


Frank added “If we wish to have our voices heard, if we wish to be taken seriously, if we want research towards a cure to continue, then the Foundation needs the backing of an engaged and growing HSP community. We know that there are around 1,700 HSPers in Australia but we have only about 15% of those in the HSP community. We will be a lot stronger if we can appeal to this unknown 85%.”


The website, the main source of news and information for the HSP community attracts an average of 800 visitors per month from 80 countries, who view in total around 5,000 pages on the website.


Frank continued “All the statistics indicate that people are getting value out of the community and through the services provided by the Foundation. As an all-volunteer Foundation with no paid staff, volunteers who regularly dip into their own pocket to cover various costs, and absolutely no government funding of any description whatsoever, we rely on the generosity of community members to continue funding the research activities underway. The greater our numbers, the less the financial burden should be on any individual, but everyone has a part to play.”


Giving in December

As the holiday season approaches, we have $23,000 to go to hit our target of $120,000 in 2012… and for that, we will need the continued support of everyone. We are doing fantastically well this year, with almost $97,000 already in. We ask you to give only twice a year, in June and December, and we now call on everyone to continue to invest in the research towards a cure for HSP.


You can give any day of the week, and any time of day or night just by going to the website homepage and clicking on the orange GIVE button on the menu bar.




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