HSP community survey

What you told us

Everyone understands the tyranny of distance, with a rare disease like HSP in a big country like Australia, in developing social cohesion in the community and engaging the community with the work and resources of the Foundation. Everyone also understands the restrictions on what the Foundation can do and achieve with just volunteers on a shoestring budget. However, despite such limitations, we believe that we can do more and better. To that end, community members were invited to take a survey about the role of the Foundation in November / December last year.

A big ‘Thank You’!

A big ’Thank You’! to the 130 or so community members who gave insightful responses and good suggestions, out of a total of around 450 people contacted – a response rate of just under 30%, which is pretty good going and a healthy sign by itself.

Anthony McInnes

Analysing the survey data

As we start to analyse and unpack the data, it is good to remind ourselves that we don’t know the views of the 70% of community members who did not respond. The objective is to have community members feel engaged in the community and with the work of the Foundation, whether it be providing support to community members with information about HSP or relying on the support of community members to fund the research for an effective treatment. It is a two-way street. Committee member Anthony McInnes is leading the analysis of survey data.

What you told us

The main messages from the survey data analysis:

  • 80% of respondents are satisfied with the Foundation
  • 85% say the Foundation has a good reputation
  • 75% are aware of the Foundation’s fundraising, but only just over half are aware of the role of the Foundation in facilitating and funding research, with only a similar proportion being aware of the Foundation’s community, education and information activities
  • just 25% feel well-informed regarding information from the Foundation
  • almost 40% have mentioned the Foundation to a health professional, but fewer than 20% of survey respondents heard mention of the Foundation from a health professional
  • the website is the preferred source of information on HSP (40%) by quite a margin with neurologists the preferred source for 20%
  • the website is generally accessed quarterly when updated with the reliability and reputation of the content highly regarded
  • 80% think that fundraising activities are pretty good or better with 2/3 of respondents having contributed at least once
  • affordability is the key reason stated by those who have never given
  • about half think that the Foundation should do more to help people connect with each other, with quite a large proportion unsure
  • respondents were largely happy with the Foundation focus on education and information.

Respondents were aged between 18 years and over 75, with the majority sitting between 55 and 75. There is a close to 50/50 mix of males and females, and most live in a metro area.  The vast majority who took the survey have HSP or an undiagnosed neurodegenerative disease.

Next steps

The next step is to complete the data analysis, agree on the priorities that emerge for action, and come up with the highest value initiatives within resource constraints to improve community engagement. You can expect to hear from us again soon.


  1. The summary was very good and the fact that the Foundation is up to date and certainly well informed with a clear direction make people with HSP feel confident with the future. The survey is very useful in helping The Foundation know which direction to go and to know they are going in the right direction with the highest value to the community. Well done to The Foundation for all their efforts. It is appreciated. 😀

  2. I am so grateful to have connected to this organisation & receive such helpful information & support. After being symptomatic for many years but only having a diagnosis 6yrs ago 60yrs old; it has been incredibly helpful to not feel alone & find the professional support I needed.

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