HSP on Podcasts

HSP features in two different podcasts, which you might be interested in listening to. Both are episodes of the Rare on Air series, created by Eurordis.

This link takes you to the podcast page: https://www.eurordis.org/rare-on-air/

The page will open episodes in Spotify, but you can also subscribe to this and listen through other podcast providers.

The two episodes are:

Putting Patient Journeys into Action, from 12th September.

In this episode Lori Renna Linton talks about the HSP patient journey which she and I put together, synthesising the results of my surveys over time into a practical document to help people with HSP be able to highlight key issues in conversations with healthcare professionals.

https://open.spotify.com/episode/3z8u7BTx9HW2qvTN2rO7ZF?go=1&sp_cid=f4723d1b26e521993d54a2845332ea08&utm_source=embed_player_p&utm_medium=desktop

Marina Zapparoli Manzoni on the power of finding and building a community, from 27th June.

In this episode Marina (chair of EuroHSP) talks about her families journey with HSP, and how it has moved her to advocate for HSP through EuroHSP and the various national HSP groups. The voice from these groups helps move researchers towards improving their understanding of HSP and exploring treatment and support options that are useful for people who have HSP.  

https://podcasters.spotify.com/pod/show/eurordis/episodes/Marina-Zapparoli-Manzoni-on-the-power-of-finding-and-building-a-community-e2lc8f4

If you prefer to access these in a different way you can also access through YouTube:

https://www.youtube.com/playlist?list=PLAxshsSSDfaC7T0wABZeRcaOYZELtBfsV

More on Paralympics

 After the Paralympics finished I had worked out the number of medals for all of the people with HSP competing in the Olympics. I also put a photo together with all of the wonderful people with HSP who were competing:

Since this I have become aware of another person with HSP who was competing - Daniel Mendes was competing for Brazil in the swimming, and won a Bronze in the mixed 4*50m freestyle relay.

This brings the medal tally up by one to:

Gold - 3 (All from Rebecca Hart in the equestrian)

Silver  - 2 (from Roman Polianskyi in the rowing and Toni Ponce in the swimming)

Bronze - 3 (from Austin Smeenk in the athletics, Dayna Crees in the javelin and Daniel Mendes in the swimming).

If Team HSP were a country then it would feature between Greece and Venezuela, but the addition of another Bronze doesnt change this because Greece have 3 silver and 7 bronze medals.

If anyone knows other people with HSP who were competing in the Paralympics, please let me know, and I can make an updated picture to include Daniel (and any others).

The full list of athletes I found is here: https://hspjourney.blogspot.com/2024/08/hereditary-spastic-paralympians-2024.html

Here is Daniel with his team at their medal ceremony: