UK HSP Support Group AGM

A couple of weeks ago the UK HSP Support Group held its AGM. Due to the effects of Coronavirus it was held on-line via Zoom. Group members and regular readers will note that the AGM usually has the official business first, followed by a series of presentations. The on-line AGM covered the official business part of the AGM only, with the presentations advertised for later in the summer.

Of course, I write this post wearing my chair of the group hat, and the us/we references are about the Support Group. You can read a summary of activities below, but if you'd prefer to watch a recording of the AGM, read my latest blog post with links and more details: https://hspjourney.blogspot.com/2020/07/hsp-on-youtube.html. Written summary:

Activities as usual:

• Welcoming new members to the group
• Meetings
• Member and researcher grants
• Newsletters (all on website)
• Attendance at HSP and Rare Disease meetings (January 2020 Newslink covers most)
• Asking for people to help (new page on website)

New Activities:

• Digital Meetings - needed to do this due to Coronavirus
• David Pearce bequest - details of the bequest and how we are using it - including two new awards
• New committee structure has started up
• Searching out new honorary members - healthcare professionals who work with HSP patients
• The new group website has gone live
• Existing group profile on FaceBook, and new ones on Twitter and LinkedIn 

Thank You!

It was important to recognise and thank all those who had contributed to the group during the year:

• Members - Without members we wouldn’t be here
• Volunteers - Their valuable time makes this group work
• Fundraisers - Activities raise funds and awareness - Amazing!
• Researchers - Their work gives us hope

Award for fundraising

This year, the award is given to Peter Bateman who over the period 2011 to 2019 raised over £10,000 for the group. He did this by providing HSP Group customised key rings and pens together with collecting boxes at hotels and golf clubs etc. near where he lived, his regular replenishment and cash collection no doubt helped in delivering this fantastic amount for us.

Award for raising awareness of HSP

This award is given to Lily Rice who has used her situation to great advantage in becoming the first European person to complete a wheelchair backflip. She has become a mentor to other young people who are coming to terms with life in a wheelchair and uses these opportunities to raise understanding and awareness of the condition and of the Group. Lily was on BBC1 a couple of weeks ago, and I encourage you to watch her episode of Our Lives, Defying Gravity on BBC iPlayer.

Ambassador - Amber Meikle-Janney. 

Last year at the AGM we made Amber our first ambassador for the group, and Amber was really pleased about this. Amber works with the charity Back-up, which helps people with spinal cord injury. Amber teaches wheelchair skills, and when working for the charity has an honorary spinal cord injury herself. These courses are great because they help people do more with their wheelchairs, and it helps people to see them as a benefit more than a burden. 

Research Grants

We received three grant applications recently and have used our newly developed assessment procedure

to successfully evaluate them. We have been able to provide funding for all 3 applications received:

• University of Exeter – PhD student working on biomarkers, aiming to develop a predictive HSP blood test, applicable to all types of HSP.
• University of Sheffield – PhD student working on biomarkers and gait analysis for SPG7, aiming to develop predictive measures.
• Institute of Molecular Biology and Pathology, Rome – Work on predictive biomarkers for SPG4

Elections

Two Trustees, Adam Lawrence and John Mason were at the end of their present term and are standing for re-election. Mitesh Patel is standing for election for the first time.

• Adam Lawrence was re-elected by a unanimous vote.
• John Mason was re-elected by a unanimous vote.
• Mitesh Patel was elected by a unanimous vote.

Presentations

On-line presentations will be given as follows by speakers we had arranged for the AGM:

• Saturday 25 July - Prof Andrew Crosby and Dr Emma Baple are going to be talking about their work on cholesterol processing which was published in the neurology journal, Brain last year. They will also talk about their plans for the future.
• Saturday 1st August - Dr Channa Hewamadduma is going to talk about the work that him and his team undertake in Sheffield, looking at some of the insights and learning they have gained from their approaches to working with a large cohort of HSP patients. 
• Tuesday 11th August - Dr Gita Ramdharry will be talking about the Physical Activities in Rare Conditions. She will also cover more general aspects of rehabilitation and the importance of physical activity for those of us with HSP.