US and UK HSP groups’ Newsletters

Posted - February 2017 in HSPRF News

Read what’s happening in other groups

 

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Synapse (USA)

The latest issue of Synapse from the SP Foundation in the USA is Volume 20, Issue 1 (Winter 2017).  Download by clicking this link: http://sp-foundation.org/news-resources/newsletter.html

Highlights include the announcement of the sponsorship of 5 new research projects totalling $600,000 over a two year period.

There is a very informative article by US doctor and HSPer Malin Dollinger – Your Wheels are your Legs – Part I Electric Scooters and Wheelchairs: How To Be “On A Roll” Safely And Efficiently.

 

HSP Newslink (UK)

The headline story in UK Newslink Feb2017 (click to download) is about a non-HSP mother, Michelle, whose husband and son have both just been diagnosed with HSP. Michelle is taking on the “walk 1,000 miles” challenge to raise awareness of HSP.

 

President Ian Bennett and Adam Lawrence who runs the surveys familiar to members of the Australian HSP community both have interesting and informative articles. They attended the Physical Activity in Rare Conditions Collaboration (PARCC) run by a group of researchers interested in rehabilitation of people with rare neurological conditions, including HSP.

 

Adam also reports on the results of his recently completed mobility survey as well as on fatigue and incontinence.

 

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