EuroHSP meeting in Innsbruck

At the weekend I had the pleasure to attend a EuroHSP meeting in Innsbruck. I was there with my HSP Support Group hat on, along with similar people from other European HSP groups.

I had met several people at the previous EuroHSP meeting in Vienna in 2019, and the Spatax meeting in Nice in 2019. It was also good to meet some new people as well.

It was a one day meeting. In the morning we had a bit of an update on the recently started SPG4 project which the group is running. Headlines of this project can be found on the newly updated EuroHSP website: https://www.eurohsp.eu/eurospg4. The project is looking at a potential drug route to increase the levels of spastin in cells of people with SPG4. 

There was also a great discussion about the role of the various groups. In summary the groups are there to be the voices for people with HSP. Our voices and actions help people feel less isolated, and it doesnt matter if we talk and nobody replies - the fact we are talking and people are listening is the important part. We agreed that we need to better at using our voices, and we need to find places where younger people might be listening.

The observation was made that funding is difficult - there are many projects seeking money from a limited number of sources. The observation was made that "basic science" turns money in knowledge, and then "applied science" turns the knowledge back into money. Solutions require both basic science and applied science.

In the afternoon we had two presentations from researchers. The first presentation was by Cinzia Rinaldo, and was very similar to the one she gave to the HSP Support Group earlier in the summer. I wrote about that here: https://hspjourney.blogspot.com/2023/08/2023-agm-spastin-recovery-in-hsp.html

The second presentation was by Matthias Amprosi. He is working in Innsbruck on HSP. Much of his work is on developing patient reported outcomes which can be used by clinicians and/or other HSP researchers to assess how well treatment approaches work. He has authored a paper which I need to look at in more detail in the future: Toward the Definition of Patient-Reported Outcome Measurements in Hereditary Spastic Paraplegia: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9832334/. Essentially, some aspects of HSP are not captured completely in some of the clinical scales used, which makes it more challenging to measure the effectiveness of treatments and/or the progression of HSP over time.

He also noted that HSP has potential to affect the autonomic nervous system in addition to the somatic nervous system. The somatic nervous system controls our voluntary movements, and as many know control of leg movements becomes more difficult as our nerves degrade. The autonomic nervous system controls the involuntary processes, like heart rate, breathing and digestion. With some of the complex types of HSP autonomic systems are affected, and it was very interesting to hear the nervous system classified in this way.

There are more things for me to explore and write about in the future.