Global collaboration between HSP support groups

Posted - December 2014 in HSPRF News

The way forward for HSP research

 

Two pieces of good news were received in October.

 

SPF Chair Frank Davis

SPF Chair Frank Davis

 

SPF co-founder Mark Weber

SPF co-founder Mark Weber

The SP Foundation of the USA approved a grant of $120,000 to support the 2 new drug validation studies underway, matching the $120,000 in support funding for these studies given by this Foundation. We are very appreciative of the SPF’s favourable decision on the grant application, and whilst it was made solely on the merit of the research proposal, it represents a positive step forward in the level of partnership and collaboration between our respective HSP support groups.

 

 

UK group Chair Ian Bennett

UK group Chair Ian Bennett

 

UK Research Co-ordinator Simon Hubbard

UK Research Co-ordinator Simon Hubbard

The 2nd piece of good news was that the UK HSP Support Group has chosen to fund HSP mice behavioural research at the University of Sheffield in an amount somewhere between £10-15,000. HSP mice from Sheffield are being imported into Australia for the mouse project here as the collaboration between the Griffith HSP research team and the research team in Sheffield grows and expands in scope. Paralleling that is the increasing partnership and collaboration between this Foundation and the UK HSP Support Group that is reflected in their choice to provide support funding for the work at Sheffield.

 

 

We are most grateful for these collaborations and believe that developing opportunities for expanding collaboration amongst HSP support groups globally is firmly in the best interests of HSPers everywhere.

 

A big Thank You! to both the SP Foundation in the USA and the HSP Support Group in the UK.

 

Comments on this story

  1. Donald (USA) posted at 3:04 am on 29 December 2014Reply

    SPF CHAIR Frank Davis, How would I be able to get a clinical tial in 2016 for Hereditary Spastic Paraplegia. Are there going to be any clinical trial for this disease in the United States in 2016, or am I going to have to go to Australia.
    Thank You,
    Donald

  2. Editor posted at 7:57 am on 30 December 2014Reply

    Editor’s Note: At this point it is intended to run the early-stage clinical trials in Australia. Holding clinical trials is no guarantee of finding an effective treatment. Further, it is common practice in clinical trials for half of the participants to receive an inactive substance (placebo) in order to compare the effects of the group receiving the real drug with the placebo group.

  3. Donald (USA) posted at 8:30 am on 3 February 2015Reply

    I`m hoping in the near future, I can get a clinical trial for this disease, I have a younger brother also, age 51 with this disease also. I hope I can get an email from someone to lead me in the right direction for the clinical trials, before they start in 2016.
    Thank You,
    Donald
    PS. Thank You for sending an email on short notice, too!

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