Annual Report 2007 – 2008

Providing the opportunity for all HSPers and their families across Australia to be members of a community

Here’s how the HSP Research Foundation Inc. is doing on its Constitutional job of providing the opportunity for all HSPers and their families across Australia to be members of a community, with the website being the community hub and source of information, education and support.

During the year the website was further improved and has reached a standard equal to the best of charity websites. For those few not on the internet, we have a postal system that is keeping them informed and involved.

Website use by members beyond information-seeking is limited however. There seems to be a reluctance to contribute to the ‘Member Profiles’ section where a photo and short biography allows us to get to know each other.  Similarly the ‘Your Feedback’ section where we have the ability to comment or ask questions is only sparingly utilised. As we are thinly spread (only about 1,000 in Australia) resulting in little opportunity to meet in person, the website is a vehicle that can offset this isolation factor.

The statistics of ‘hits’ on the website show that we are being visited by people locally and internationally to a much greater extent than in the previous year. Also the [email protected] link has received much more use. Many of the new visitors to the website will be HSP families that have not made contact with the HSPRF. We say to these people ‘please stay in touch via the website as we operate for all Australian HSPers’. But please get in touch with us so we can build our numbers and strengthen our funding submissions for Grants.

Estimates of how many HSPers we have in Australia range from 800 (using German data) to 1,400 (applying US rates). So we say there are 1,000 but we have well under half that number on our records so please get in touch so that we build and strengthen the community, the Foundation and what we can achieve together.  Call (02) 4975 4754 or email.

Our Funding Challenge

The big challenge for the HSPRF is to fund our future and that challenge belongs to all HSP families. Whenever HSP families link up with a club, sporting, church or other local community event, we seem to be successful, not because the bodies involved analyse disease prevalence, economic impact, etc., but because they are helping people they know and trust it is a good cause.

When it comes to larger sporting events with charity sponsorships like the City 2 Surf, they satisfy themselves that we are a registered charity with the right systems in place. This year $20,000 was raised in the name of HSP in the City 2 Surf as a result of an HSP family initiative and drive. Oxfam 100km walks through bush and Arrow foundation canoeing on the Hawkesbury River near Sydney are similar events but run by the charities themselves and from which we could learn.  It only takes the idea and the commitment from anyone in our community to make something magnificent and important to our cause happen.

Another important funding segment available to us is the philanthropic organisations with which we have been so far unsuccessful (only $12,000 raised of $176,000 raised since we started). These take the shape of sole philanthropic organisations, the Perpetual Foundation being the largest, and corporations that have a philanthropic section. They all have a mission statement of some kind that describes the scope of their funding. While this is a Committee responsibility we would welcome any contacts or links that we could use to help open doors.

The third segment is HNWIs (high net worth individuals). This is for all of us to consider how we can open the subject and follow through professionally. Rest assured you will not have been the first to ask them. A simple “how about having a look at our website and I will give you a call to see what you think about giving us a turn” may be all that’s needed.

We now we have some momentum and a track record of success – let’s  keep it up.

Robin Bligh