Synapse (USA) and HSP Group Newslink (UK)

News from other HSP groups


The SP Foundation USA has published the Fall (Autumn) 2019 edition of its newsletter Synapse.


. . .


In 19 pages jampacked with stories and articles, there is something of interest for everyone with HSP – a new mobility device called the ‘Alinker’; wheelchair bowling; getting diagnosed; dealing with incontinence; conference presentations; community connections, awareness and activities and the President’s letter talking amongst other things about the high quality of research proposals that have been submitted for funding.


  • SPF President speaks about Fundraising
  • Membership Awareness Activities
  • Mobility Device – The Alinker
  • Wheelchair Bowling
  • About Diagnosis and Living with HSP by members
  • Incontinence, A Medical Perspective
  • Member’s Connections
  • Membership Fundraising Efforts

Find it here:


HSP Newslink, the newsletter of the HSP support group in the UK, was published in September.


. . .


The saga of a man who undertook a staggering physical challenge to support his recently diagnosed grandson, and everyone with HSP, is a compelling story worth reading.

The Chairman’s Column presents a broad scope:

  • a new mission statement for the group
  • guidelines for the research grant process
  • appointment of an ambassador to raise awareness
  • cannabis based products for clinical trial – amongst other things.

Another section features members letters, then there are reports of regional branch meetings and upcoming get-togethers.



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