US & UK HSP support groups

Posted - December 2020 in HSPRF News

Latest Newsletters

 

HSP support groups, the Spastic Paraplegia Foundation (SPF) in the US and the Hereditary Spastic Paraplegia Support Group in the UK have both recently published newsletters.

 

Synapse, Summer 2020

The newsletter of the Spastic Paraplegia Foundation (USA). Highlights include:

  • Letter from President, pp. 1 & 3, New research projects funded, including:
  • Pembe Hande Ozdinler, Chicago USA “Directed Gene Delivery to Upper Motor Neurons”
  • Siddharth Manish Banka, Martin Peter Lowe and Anna Nicolaou, Manchester U.K. “Zebrafish models to study and treat hereditary spastic paraplegia.”
  • Cahir O’Kane, Cambridge UK “A neuron within a neuron: Is continuity of the axonal endoplasmic reticulum a factor in HSP susceptibility?”
  • Carolyn Sue, Sydney Australia “Finding drugs to treat SPG7 HSP”
  • Global Virtual Conference (available on Youtube) p4
  • A Brief History of my HSP Journey, p5, The SPF became an inspiration to create a group within Brazil.
  • “Automatic” Shoes, p7, Adjust the laces the first time you wear them, you will never have to touch them again www.zebashoes.com (they ship worldwide for free so they are available in OZ.)
  • Supporting the Quest for Cures, p11, Researcher Sabrina Paganoni and her team, Boston USA, investigating MRI-PET for assessing disease states.
  • To Catch a Thief, p13, Endorphins and hand cycle
  • Gardening with PLS, p 14, 4-wheel drive walker, walking sticks, True Grit Freedom Chair.

 

 

HSP Newslink, October 2020

 

Congratulations to the HSP Support Group (UK) on the milestone of the 50th issue of their newsletter HSP Newslink.

 

Highlights in the 50th edition include:

  • Life in lockdown… at least for one community member
  • Thinking about a name change for the group
  • Sessions from the AGM on YouTube and transcripts of presentations
  • Editor’s column
  • New trustees, increasing awareness … and more!

 

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