US & UK HSP support groups

Latest Newsletters

Here are links to the most recent newsletters from the HSP support groups in the US and the UK.

Synapse, Summer 2021

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

  • Letter from the President
  • Rich and diverse member stories from David, Christie, Kristi (mother of 3-year-old Logan), Michelle, Molly, Sofia and Kyle – with an emphasis on living with the condition they have.
  • Michelle from Brazil has a background in science and HSP SPG8 in her family. They organized a support group, ASPEC Brasil, the first association in Latin America for people with HSP and their families.
  • Ten Steps for Coping with Chronic Illness

Annual Conference 2021

With no face-to-face annual conference again this year, the SPF launched the 2021 Annual Conference Online Series with four online presentations spanning June to August. They can be viewed on the SPF’s YouTube channel.

Of particular interest is the first video in the series with Dr. Hande Ozdinler of Northwestern University in the USA who is at the cutting edge of neurodegenerative disease research. For those interested in the latest scientific discoveries in this field, this is well worth a watch. The video is almost 2 ½ hours long, so you may want to watch it in stages. Dr. Ozdinler begins her presentation at the 11m:20s mark of the video.

HSP Newslink

‘HSP Newslink’ the newsletter of the Hereditary Spastic Paraplegia Support Group in the UK, March 2021

Download from here:

The Queen Bee of HSP – one HSPer takes up beekeeping

Chairman’s Column – Adam discusses:

  • Coronavirus vaccine
  • potential name change for the group
  • Zoom meetings instead of face-to-face
  • Plus awards, YouTube channel and more.

Editor’s Column: Ian shares the joy of his grandson and what he is doing in these turbulent times.

HSP Zoom Meetings: Zoom meetings are a great way of getting members together and socializing or chatting about their HSP issues. They also have the big advantage of people participating who could not physically attend face-to-face meetings. There is a full section in the newsletter reporting on various Zoom meetings.

Members’ Letters: substantial and interesting letters from members, including:

  • Brooke’s Bike Journey ultimately to an Electric Recumbent trike, one day !!!
  • My Garden is Special! Gary talks about the joy, fascination and interest to be found in his garden and in the local park, especially the birdlife
  • Kevin had been struggling with ‘jumping feet’ and poor sleep. He tells of the turnaround using a weighted blanket and taking CBD oil.

One member said how much he enjoyed doing Aerobics at home in his wheelchair! He suggested we looked at YouTube, putting “Seated Aerobics” into the search. You’ll find LOADS of fun and not-too difficult exercises of all different styles and strengths, and for all ages too, so you will be able to choose one to suit your own personal needs.

Finally, the results of the 8th worldwide annual survey of people with HSP conducted by Adam Lawrence is presented.

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