Bulletin No. 2 – June 2005

AGM – Notice of Meeting

This is the second Bulletin of the HSPRF and is being sent to Members along with the Notice of Meeting papers for the AGM on June 26.  It is also being sent to people who attended meetings or made contact with us and who have not yet become members.

The Bulletin contains an invitation to you all.


Having become Incorporated and received our Australian Business Number earlier in the year our next formation milestone is to obtain Deductible Gift Recipient (DGR) endorsement by the ATO.  Simply, this means that people who Donate to us will have a number on their receipt which enables them to deduct the amount from their tax – without it we are quite uncompetitive.

Meeting the documentation requirements of the ATO has not been easy.  Acting Secretary Judy Hoole and Robin Bligh (Public Officer) enlisted the help of a lawyer on a pro bono basis and member, Maree Pryde, who is accountancy qualified, and resubmitted.  Informal feedback from the ATO was that we have got it nearly right.  We are confident of having DGR status by the AGM.

Our mail address is PO Box 4008 Rathmines, NSW, 2283 and phone number (02) 4975 4754  9am to 5pm (Mon to Fri).  This is a communications centre being managed by member, Therese Bligh. She will take and on forward most messages to the appropriate person for action and handle some enquiries herself.  When we have an email address the emails will also be received at the communications centre. There are no plans to have an “office” as we intend to use the net for communications and file management with the communications centre being our public portal.

Website production has been slow.  While we must have a website and email address it has the potential to eat up half our cash in the first year.  We are seeking low cost ways of producing and servicing a four page web site that appeals to potential members and donors and successfully differentiates HSP from the multitude of rare diseases.


By the time of the AGM we should have close to 50 members all from NSW, Victoria and SA which is where we held meetings with the assistance of the State central Neurogenetic support body concerned.
Prof. Garth Nicholson in Sydney and Assoc. Prof. Martin Delatycki in Victoria were most cooperative as is Prof. Eric Haan in SA for our meeting on June 19.

However only a percentage of HSPers and those at risk are registered with these bodies and we are still not reaching people who are in the care of a private neurologist.  The Australian Association of  Neurologists have been unwilling to assist us but we were able to obtain a list of SA neurologists to whom we have written personalised letters asking them to alert their HSP patients to the meeting.  They are busy people and may or may not take action.  We intend to complete the roll out in other States and territories after the AGM.


For catching up yourself and spreading the word before we have a website, we have the following that can be emailed to you on request:-
*Draft Charter of the HSPRF (which is the document that sets our purpose and direction and will be considered at the AGM—hence it is a draft)
*Lecture slides of Assoc. Prof. Martin Delatycki used at the Vic meeting
*Slides used by Robin Bligh which are based on the Charter.
*Membership Application Form
If you are not on email please write to the PO Box and it will be sent.
Email requests to [email protected]

Robin Bligh