News from US and UK support groups

Posted - September 2020 in HSPRF News

Annual conferences and newsletters

 

HSP support groups, the Spastic Paraplegia Foundation (SPF) in the US and the Hereditary Spastic Paraplegia Support Group in the UK have both held their Annual Conferences online over the northern summer, as well as publishing their respective newsletters.

 

Spastic Paraplegia Foundation (USA)

Annual Conference 2020 Day 1

Annual Conference 2020 Day 2

 

Synapse Newsletter Spring 2020

The Spring 2020 edition of the SPF’s newsletter Synapse:

  • Letter from the President
  • Resilience Matters
  • Rare Disease Week on Capitol Hill
  • Notes from Hospital and Rehab Stays – things to consider if you have a hospital stay including issues around surgical anesthesia and drug and dosage notes
  • It Needs More Power – add-on device for manual wheelchairs that gives chair power
  • Mobility Aids That Gave Back My Independence – Adding hand controls to a vehicle .

 

 

HSP Support Group in the UK

2020 Virtual AGM

 

Newslink Newsletter May 2020

 

The May 2020 edition of UK Newslink:

  • Much loved former chairman (2003-2009) David Pearce passed away
  • Chairman’s message
  • Virtual AGM, David Pearce Bequest
  • Life during the pandemic, fundraising…
  • Adam Lawrences’ Survey Results

 

 

 

 

 

 

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