Saturday 30 July 2022

SP Foundation 2022 Conference

The USA HSP group, the SP Foundation, held their annual conference a couple of weeks after the UK HSP Group. They have put their conference up on their YouTube channel. There are some interesting presentations made. I've not watched all of these in full, but have dropped in and scan watched to get a feel of these.

John Fink gives advice on how to exercise with HSP. https://www.youtube.com/watch?v=lnWNVQoAEoI - he gives approaches how how to dance with HSP to promote exercise, muscle movement and brain training. He includes a summary of treatments for HSP symptoms.

Chelsea Burton talks about symptomatic management of spasticity. https://www.youtube.com/watch?v=ffYBcmzK24A - She covers in detail what happens to muscles with spasticity, both positive and negative. She describes different physical therapy options - starting with stretching, and covering orthotics, ultrasound, FES, strength training and other options. She also gives details of various spasticity medications.

Angie and Jeremy McCord give the meeting some exercises to do! https://www.youtube.com/watch?v=EkB9pztTYyc Some of these use exercise bands.

Darius Ebrahimi-Fakhari talks about lessons learnt in childhood HSP. https://www.youtube.com/watch?v=kcUtKubq9io - he describes their cohort of children with HSP, and talks about approaches for drug discovery, looking to develop in cell testing for drug repurposing. 

Hande Ozindler talks about developing treatments for upper motor neuron diseases. https://www.youtube.com/watch?v=5naax-hv__E - She talks about how her lab are researching treatment options for upper motor neuron degradation. 

Peter Baas gives an overview of HSP, and then talks about options for investigating treatments for SPG4.  https://www.youtube.com/watch?v=5llJfLCf8gs#

There is a panel discussion taking questions from the audience: https://www.youtube.com/watch?v=p7XrluYZwUU. John Fink then answers some more questions! https://www.youtube.com/watch?v=KGyjiCUqjSc


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