Rare Showcase 2020 Lightning Talk

Today I took part in a lightning talk at the Findacure virtual Rare Disease Showcase.

Findacure have been hosting rare disease events for a number of years, and regular readers may remember that I went to their drug repurposing conference in 2016 (yes, there are posts here about that). One of the support group trustees suggested that I talked about the needs identification which I'm covering in this years survey, and that idea was liked by Findacure, so I was up.

Regular readers will note that I usually write up various points and observations from these meetings, however project commitments at work meant I was only able to attend today. I was working on a range of other support group activities this morning, so I was listening to a few of the other talks in the background.

My key takeaway from those talks were the discussions around how social media can be both a blessing and a curse. A study was being talked about where the participants were sharing their experiences during the trial on social media. The result of all the attention was that even those in the placebo arm of the trial showed changes, and hence the study couldn't demonstrate what it wanted to.

For the lightning talks round I was one of five presenters, and I volunteered to go first. There were a few teething issues with my technology which meant that I went a little faster than I wanted to and finished in 4 mins 26 seconds. It was really good fun to take part in!

I had taken the approach of going for five minutes, five things to say:

• What is HSP
• How does HSP affect people
• Available support networks
• The approach to needs identification
• Some early results

You are welcome to look at my slides here: https://drive.google.com/file/d/19kLBCvra33y0Vut5jH9WFxouywd8Kz8C 

The other four presenters were telling the stories of their rare disease experiences, and it was insightful to hear that actually those with rare diseases are often in the same boat - trouble with diagnosis, trouble finding information, trouble finding treatments. Everyone was really friendly, and there were some interesting questions at the end. In summary, great fun!

I'm hoping to get the recording of my five minutes for youtube!

I am quite pleased with my support group network map:

A week of publicity!

So, this last week or so has seen me being involved in a couple of publicity activities.

One of the other trustees at the support group had recently suggested that we put ourselves forward for a couple of things, and these have been developing nicely recently.

We said that I would be prepared to do a five minute talk in one of the lightning talk rounds at this years rare disease showcase, and out of many, I was selected to do this. In the last week or so I have been working out what to say and what to show. My topic (as suggested by our trustee) was around using technology to identify the needs of those with HSP, so a perfect excuse to draw together lots of HSP strings together, including some of the early results from my survey.

If you wish to watch, you can still sign up for the virtual conference: https://www.findacure.org.uk/rare-disease-showcase/, and my session is on Thursday afternoon. Having had a look at the agenda, there are a load of other excellent sounding talks, a few of which I should be able to attend whilst I am there.

Also, we said that we were happy to take part in the Student Voice competition, and I was paired up with a student to talk about my experiences with HSP. The competition is here: https://www.findacure.org.uk/student-voice-prize/. We had a good chat and I was able to share many aspects (including some other early survey results!), and we should find out soon the result of that competition soon. If that essay is the winner, then HSP will get a mention in https://ojrd.biomedcentral.com/

HSP on YouTube

 Since my latest venture becoming a YouTuber, I have been meaning to find time to watch various other relevant HSP things in order to report them here.

Finding that time seems to be somewhat challenging at the moment, so I am putting the various YouTube links here, and I'll come back another time to report them. There are two different channels which I mean to look at first:

ERN RND

The European Reference Network on Rare Neurological Diseases (ERN RND) have run a series of webinars over the summer, several of which are relevant to HSP. Each webinar was broadcast on a separate day.

There are five that caught my attention, which I have put the titles and links to in this table below.

Title	Link
Environmental modifiers in Hereditary Spastic Paraplegia	https://www.youtube.com/watch?v=GlmsbKSLTOA
Gait rehabilitation in people with HSP	https://www.youtube.com/watch?v=xR_7A-JVB-E
How to assess and manage spastic gait in rare diseases?	https://www.youtube.com/watch?v=sqznUcJXGsI
Hereditary Spastic Paraplegia (HSP) clinical disease course	https://www.youtube.com/watch?v=vEh4JXi3f9E
Treatment of spasticity in HSP	https://www.youtube.com/watch?v=NzceL8JDwes

There's about 5 hours of watching here. They also have videos on other conditions than HSP, and you can see the full details on their channel: https://www.youtube.com/channel/UCLpEdEyhGnQpdmLLzqNXkTg/videos 

SP Foundation

The Spastic Paraplegia Foundation ran their annual conference on-line, and have uploaded videos of this onto their channel. Their conference ran over three days, and I have included the relevant links into the table below:

Title	Link
SP Foundation: Virtual Conference Day One June 26, 2020	https://www.youtube.com/watch?v=kNxbhCuAOj0
SP Foundation: Virtual Conference Day Two June 27, 2020	https://www.youtube.com/watch?v=IFUBvOZIpbA
Path to Improve Upper Motor Neuron Health	https://www.youtube.com/watch?v=MC6NORfD9uk
Genetic Topics in HSP & Related Diseases	https://www.youtube.com/watch?v=_Zd3Kp5n7eI
HSP: Understanding What's Wrong So That We Can Fix It	https://www.youtube.com/watch?v=C3EmaLMSGTY
Research Advances in the HSPs	https://www.youtube.com/watch?v=61U-Xm42N6o
A Multimodal Strategy to Finding a Cure for an Ultra-rare Disease	https://www.youtube.com/watch?v=nDOyw7qX_uw

There is a video each for days one and two of the conference, and (as far as I can tell) the third day has been split into separate presentations. Overall there is about 9 hours watching here as well. They also have other videos on their channel: https://www.youtube.com/c/SpasticParaplegiaFoundation/videos 

This includes videos from the past three years, and it is worth watching the Q&A with Dr Fink, as these give some great pieces of information.

(p.s. I dont know what happened to October, all of a sudden we have arrived in November! I was planning to put this post up in late October, so that my survey launch post got a long time as most recent post! It makes Oct 2020 only the second month when I have posted just the once - April 2011 being the other one)