US, UK and German HSP Groups

Posted - September 2018 in HSPRF News

What other groups are doing

 

Newsletters of the US support group, the Spastic Paraplegia Foundation, the UK Hereditary Spastic Paraplegia Support Group and the dual language online magazine of the Tom Wahlig (TWS) Foundation in Germany are now published.

 

. . .

The Spring 2018 issue of Synapse (Volume 21, Issue 2) has the following highlights:

  • $900,000 of donations were appropriated to support research.
  • My Home Exercise Program offers simple instructions with pictures.
  • There is an interview with Craig Blackstone, one of the world’s leading HSP researchers.

 

The SP Foundation held its annual conference in late June 2018. The main presentations:

  • Transforming Remarkable Genetic Advances – Dr John K Fink, MD
  • Cell Therapy Update – Dr Corey Braastad, PhD
  • PLS Research Update – Dr Sabrina Paganoni, PhD
  • Current Genetic Topics in HSP and Related Diseases – Dr Stephan Zuchner, PhD
  • PLS Research Projects Update – Dr Hiroshi Mitsuimoto, PhD
  • Questions and Answers – Dr John K Fink, MD, SPF Medical Advisor.

These are all available for viewing at this location on the SPF website.

 


 

. . .

 

The May 2018 edition of HSP Newslink from the UK features:

  • The story of Will Watson who will be tackling the route to Everest Base Camp in September to raise funds for HSP.
  • The findings of a recent survey on HSP and pain, walking, disability, employment and wellbeing.
  • More about Lily Rice who won a silver medal at the World WCMX (wheelchair motocross) championships in California.

 


 

. . .

 

TWS Magazine highlights include:

  • Henry Wahlig completing a Lake Constance public swimming event and fundraiser with a better time than last year.
  • Wheelchair dancing! There are wheelchair dance trainers and competitions. It’s a thing!
  • Fundraising ideas and scholarships awarded.

 

SOURCES:

https://sp-foundation-org.presencehost.net/news-resources/newsletter.html

http://hspgroup.org/images/Newslink/May2018.pdf

https://www.hsp-info.de/fileadmin/Jahreberichte/TWSMagazin.pdf

 

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