Bulletin No. 5 – February 2006

Posted - March 2007 in HSPRF News

FUND RAISING SUCCESS

CONGRATULATIONS to HSP Research Foundation members and their families & friends.  We had a December target of $50,000 to raise for the Gene Testing Project.  It was increased to $55,000 on a rework of costing and we exceeded the new target on time in early March 2006. 

We have raised $58,800.  WELL DONE!

A letter will soon be sent to all donors offering thanks and providing a progress report on the Project they funded.

The Project is being implemented at the ANZAC Research Institute with Prof. Garth Nicholson as the Chief Investigator.  Advertisements have been placed to find the research scientist to do the work and our first payment to the ANZAC Research Institute has been made.  The General Manager (Christine Harrison) hopes to have the job filled and underway before Easter.

Five submissions were made by us to major funders for support to the Project.  Two funders have declined and three are still in play.  As the above amount includes an anonymous underwriting of $10,000 to enable us to get started, the first $10,000 from majors will go to the underwriter.

The well known retailer, Harvey Norman, was our first donor in response to our personal letter of request. 

SCIENTIFIC ADVISER APPOINTMENT

It is important that our current and future funders see us as professional operators.  We are a lay group closely involved with complex and rapidly evolving scientific knowledge.  Prof. Nicholson and other academics and scientists have been most helpful to our still new health group.  However the Committee must review the Project’s progress, ensure effective implementation of results to the benefit of members and decide “where to from here?” after 12 months of the Project.  Good governance requires this to be separate from the Project operations.

Therefore we have substantially boosted our scientific and technical capability by retaining Dr. Tanya Applegate as our Scientific Adviser.  She is a  Senior Scientist and research team leader with Johnson & Johnson and is working on gene therapy with another disease.  She has volunteered to work with us on a part time basis.  Johnson & Johnson is a community minded company and supports Tanya’s decision.  She is well qualified for this job having done her PhD in genetic diagnostics.

GLOBAL HSP EFFECTS SURVEY

A survey questionnaire initiated by our counterpart organisation in Germany has been sent to all members for whom we have an email address.  Unfortunately there is not a non-electronic means of participation.  We will receive the results later in the year because we are a participating organisation.

If you have an email address and you did not receive a request to participate from Therese please advise her by email at [email protected]

MEMBERSHIP

Following a good start, our growth in membership has slowed.  Overseas statistics when applied to Australia suggest there are nearly 1,000 people with HSP.  We need to significantly augment our membership.  Ideas to reach non-members or to enlist known non-members would be welcome.  Please contact Therese at our number or email her.

BROCHURE

In November last year we reached the final draft stage of a standard size brochure but decided to delay production because the gene testing project information would have soon outdated the Brochure.  It is now back on our agenda and will become another means of spreading our message.

WEBSITE  (www.hspersunite.org.au)

Our website seems to be reaching interested parties and we have had several new member enquires.  All members are encouraged to use the Yahoo based chat forum of which VP, Stephen Lunn, is the Administrator.  There is a need to first sign up with Yahoo at no charge.  We are currently seeking the assistance of a website designer who can provide the technical support and creative input needed to develop the website further and to create a new forum, eliminating our need for “Yahoo”.

COMING UP

* Our 12 months experience as a health support group and the help of strategy expert, Frank McKeown, will be drawn upon to develop a new draft Strategy document.  This will be reviewed at the May committee meeting and then at the AGM for the year ending June 30.  We are a small health support group and one of several hundred competing for attention and we must have a clear direction and adhere to priorities that are going to make a difference for people with HSP.

* Our first Annual Report will be scrutinized by those in Government who gave us the right to associate, to incorporate and to raise funds that allow tax deductibility for donors.  It will also provide the basis for givewell.com to complete a profile on us.  Givewell profile all charities that seek funding from major donors thereby providing the funders with a level playing field of charities to help them make their assessments of the organisations making requests for funds.

MORE NEWS

* Col Harris (HSPer from Dural, Sydney) was the centre of attention at Westmead Hospital the other day when 5 groups of second year Sydney Uni med students separately discussed his condition with the teaching Doctor while calling for comment from Col.  They soon learned to stand aside when they tested his reflex!!  They all went away with a note about us as did the hospital teaching staff involved in the project.

* Our much larger counterpart organisation in the USA, the SP Foundation, has budgeted $400,000 for its 2006 Research Grants Programme.  Grants in the range of $40,000 to $60,000 per year will be awarded for one and two year proposals on any aspect of HSP or PLS (primary lateral sclerosis).  The application deadline is May1 with details on their website www.sp-foundation.org.

* Scientists up to now have identified 29 genes (SPG1 to SPG29) that can carry a mutation that causes HSP.  Another was found this month.  SPG4 and SPG3A are still the most prevalent.

* Stem cell research to try and direct mice stem cells to control the production of neurons has begun in mice with some promising results and may lead to a repair therapy one day.

* While HSP has no connection with cystic fibrosis (CF) both have genes that can carry nonsense mutations.  PTC 124 is a drug that targets nonsense mutations and is being investigated as a treatment for CF and Duchenne muscular dystrophy in the USA.  Preliminary results of these Phase 2 trials are expected later this year.  If trials are successful, opportunities may arise for other genetic disorders including HSP, ie. for patients carrying nonsense mutations.

* A US scientist has been able to stop the progression of HSP caused by a deficiency of paraplegin by administering it to mice via a virus.  It showed an effective mode of administration and that gene transfer may be a therapeutic option.

Robin Bligh
President