Feb 24: Everest Base Camp Trek

Jason Main and Gavin will be trekking to Everest Base Camp in February 2024. You can sponsor Jason and Gavin here:


Jason says: I will be supporting a cause very close to my family, Hereditary Spastic Paraplegia (HSP) Support Group. In short HSP is a diagnosis that covers a range of rare genetic disorders caused by one or more gene mutations. 

My mother after the birth of her second child (my younger sister) was shortly diagnosed with HSP, initial symptoms of continuous pain in her legs. Throughout the years this progressively worsened to the point of limited mobility. The best way to describe her feeling is as though your legs are permanently tense all the time, no muscle relaxation.We have visited countless consultants for treatment, many of which give temporary pain relief. It has been extremely hard to accept that a cure will not be around in this lifetime. Instead we flip it on its head, make the most of the cards you are dealt with and support best we can!  

I have no doubt great advancements in R&D of Gene Editing will come to fruition to ultimately eradicate HSP for future generations.

Comments 2

  1. We in autumn 2023 we had a presentation online (instead of AGM) from Cinzia Rinaldo in Rome who gave news of a breakthrough she had made in curing HSP4. It is now at the stage where there is a trial using mice to check that it works before a judgement is made how to progress. In reality if al goes to plan I estimate that it will be 5 years before you can pop down the pharmacy. Fortunately she collaborates with Dr Grierson in Sheffield and I am treated there where there is research into HSP SPG7 so I hope researchers will talk together!

    I have never had pain but have benefitted from regular massage of my legs and feet. I cannot imagine what it is like to live in pain and what pains I have ever had have been shortlived and sorted by a neuro massage / body worker.

    Best wishes for your altitude trek

  2. Officially made it to Everest Base Camp on Sunday 3rd March 2024!

    Many thanks to everyone for your kind words, encouragement and support. It has meant so much to a cause close to home.

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