Thursday, 30 June 2016

International Meeting on Spastic Paraparesis and Ataxias - Overview

Last week I went to the International Meeting on Spastic Paraparesis and Ataxias organised by the Spatax network and the Ataxia Study Group. The meeting was held over 3 days and there is plenty for me to report on, and this topic will be the subject of my next few blog posts. This first post covers my general observations from the meeting, and I'll get onto specifics from the different presentations and posters in later posts.

Full post index:
Papers Day 1:
Papers Day 2a:
Papers Day 2b:
Papers Day 3:
Posters 1:
Posters 2:

You can also read the spatax blog with plenty of pictures and details about the presentations and various goings on:

Before I get on to those things, a quick update on my survey to find out peoples thoughts on topics for my 2016 survey. The two clear leading topics are Fatigue and "Finding out information about HSP". I'd welcome any further comments and suggestions here, I am starting to work out my question strategy at the moment:

Back to Paris - Firstly some thanks are due. Thanks to the HSP support group for covering my expenses. My employer (Atkins: lets staff take 2 days a year leave to support charities, so thanks to them for giving me the time to attend. Thanks (obviously) to my wife for looking after the boys whilst I was out having fun for a few days!

Since I was going to be at the conference I took the decision to submit an abstract for a poster covering my survey results, which was accepted. You can see that on my research page So, thanks are also due to the people who have answered my surveys the last 3 years. Therefore, I had three topics of conversation with people - My own HSP, the results of my surveys and being part of the UK HSP group. The meeting was attended by over 200 researchers and medical professionals, and I was very pleased to have the results of my surveys up in the room for them all to have a look at. I saw many people looking at it, and I engaged in conversations with a fair few of them!

The meeting was really friendly, and I felt quite at home there. The network of researchers feels really close knit, and I was pleased to see and hear about people chatting with each other and sharing their knowledge and findings. In many respect the coffee breaks, lunches and evening social events are just as important as the presentations as they allow people to go and share ideas.

I spotted that overall there were more posters and presentations on Ataxia than there were on HSP. There was also relatively few posters and presentations on treatment and/or relief of symptoms, although it was acknowledged at the end of a couple of presentations that research on treatments may be more prevalent in the next few years.

All of the presentations (also known as papers) and posters were in English, which I was quite relieved about. It wasnt until sitting there and listening that I realised how lucky I am to be able to think and speak in English, whereas the majority of people there (from 22 countries) and having to think in one language and speak in another. The standard of presentation was high, and language did not seem to be a barrier at all.

There was a wide range of papers presented, in all sorts of fields and I have yet to piece together how all of these wide and varied topics fit into the overall HSP picture. Topics included genetic identification, proteins, bio-markers, animal models, genetic testing, cell biology, diagnostics, muscles, clinical diagnosis, symptom identification, age of onset, disease severity etc. You can probably guess that this is the "agenda" for my next set of blog posts!

I spent some time talking with the people from Euro HSP who are keen for the UK group to join. This is quite the opposite to the EU referendum held in the UK on the first day of the meeting (and reported in the second day) which resulted in the beginning of the UK's EU exit.

I think that the various patient groups need to work together, and not just the HSP groups, but those groups for people with similar conditions - Ataxia, CMT, ALS and others. I'm going to explore this further. I found out that in New Zealand HSP is covered under the group for MS, there is no group for HSP in Turkey. Within Europe the national groups have different focuses, with some focusing on fund raising and other providing support. The ataxia groups I spoke to seem to be very similar to the HSP groups, which makes me think that working together should be easy, and in France this is already done.

Speaking to various people about my 2016 survey, suggested topics include physiotherapy/stretches, bowel issues and anxiety. A few people are also looking to set up surveys of their own in their own countries.

You can see a pic of me here, with my poster - it was the first one up!

1 comment:

  1. My brother, Jim Monaco, was diagnosed about 23 years ago. He is now 69, great health otherwise. He has an appointment with a Dr. Mitchell Paulin, Paoli PA, in three weeks, who will conduct a three day procedure to discern which nerves in Jim's legs control the spasticity. Two weeks after that, Dr. Paulin will inject, somewhere L2 or L3, a permanent nerve block. Dr. Paulin says that this treatment will help control the pain and spasicity, not cure him. Dr. Paulin claims a 9-% rate, so Jim has asked to talk with one of his HSP successes. That has yet to happen. Jim supposes that if he had a successful treatment by Dr. Paulin, he would be happy to witness to a skeptical patient. Have you heard of Dr. Paulin, or any other doctors in the northeast US, who has had any level successful treatment? How can we find out about this doctor's real success with HSP? Jim will have a three hour commute to see Dr. Paulin. If anyone will communicate with us, we would truly appreciate it.