Newsletters from HSP groups UK & France

See what’s happening in other groups

HSP Newslink Issue 53, March 2022

HSP Newslink is the newsletter of the Hereditary Spastic Paraplegia Support Group in the UK

P1-2: HSPer Emily, having much success with wheelchair basketball, is fundraising for a new special chair.

P3: Chairman’s Column, including Euro HSP award given to an Italian team with the winning paper, ‪‘Spastin recovery in hereditary spastic paraplegia by preventing neddylation-dependent degradation’.

‪P4-5: Editor’s Column, including news of the Next Potato Pants Festival Sept 3rd with live music.

‪P6:‪‪ Members’ Letters including: Help! I’m going to be needing a‪ wheelchair.

‪‪P7-11: Reports on regional Zoom chats and one for people with ‪SPGs 11 and 15. And who knew there’s such a thing as a “Just Can’t Wait” toilet card.

P13-17: Adam Lawrence’s annual survey results

ASL – HSP France Magazine No. 87, March 2022

Now this is a magazine! 60 pages packed full of interesting and relevant information on a diverse range of topics regarding HSP.

President of the French Association, ASL-HSP France, Jean Benard writes:

3 specific topics  may interest you:

1) the value of the intrathecal Baclofen pump (pp 6-16) confirming the last report from the HSP Research Foundation Australia

2) The SPG7 research work of the Prof. Marelli French team in Montpellier (pp 38-40). Following a grant call & evaluation of the French Scientific Committee, a 2020 grant has been awarded by the Association (€15,000) to this team. The objective of the project is to determine whether the presence of a single mutated copy of SPG7 in the heterozygous state represents a risk factor or not; this is the situation of each parent so far considered as « healthy » carrier of this particular HSP. Moreover, this study will also allow to study possible new functions of Paraplegin and to better understand the mechanisms of the disease.

3) The exploits of our HSPer champions (pp 44-50): Armand GRAMMONT, 3rd of the 2021 wheel chair semi-Marathon of Paris as well as Arthur BAUCHET, 21 years old, triple skiing 2022 Paralympic champion (3 gold medals in Beijing games) last week. A super example for young HSPers!

Have a good read! Thanks for comments back.

All the best


Representative of the ASL-HSP France Bureau & members


Président ASL-HSP France

If you can’t read French but are interested in an article, just copy the French text and paste it into Google Translate in your web browser, or use the camera function in the Google Translate app on your phone. Both do a pretty good job of instantaneous translation into English.

Your email address will not be published. Required fields are marked *