Tag: Dr Sam Amin

The Metformin Trial and the Search for Funding by the MRC-NIHR for a  Efficacy and Mechanism Evaluation of Metformin

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March 12th 2024

About ten years ago, Dr Sam Amin, a consultant paediatric neurologist, who saw Zoë regularly at the TSC clinic in Bath, invited her to join a double blind trial to see if Metformin, commonly given for Type 2 Diabetes, would reduce common symptoms of TSC such as the frequency of seizures and the size of brain tumours.

As he mentions in the Foreword to her book,

Despite all her battles, Zoë agreed to take part in an experimental drug trial. Zoë was aware that there was a 50% chance that she may be given a placebo, but she was prepared to go through with extra tests and assessments because she understood that her contribution had the potential to further change the lives of many individuals with TSC.

And in the GOSH (Great Ormond Street Hospital) report, published in February 2021, says

Her results were encouraging, with a 38% reduction in brain tumour volume and a 75% reduction in seizure frequency during the course of the study.

As of December 2023, the NIHR ( National Institute for Health and Care Research), together with the MRC (Medical Research Council) were looking for funding for an  Efficacy and Mechanism Evaluation of Metformin to find if it is a safe and effective medication for TSC. And as far as I can see, now in March 2024, the search for this funding is still under way.

From our point of view, it certainly helped Zoë. Lets hope that funding and a research team can be found to confirm that Metformin is an effective treatment for those with TSC.

https://www.gosh.nhs.uk/news/gosh-led-metformin-trial-dramatically-reduces-seizures-people-tuberous-sclerosis/

July 2020 Zoë Finishes Her Book

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July 5th 2020

In July 2020, Zoë had finished writing her book, and to celebrate she found this flash card she used for counselling to pose for a picture. It says, ‘I feel a wave of enthusiasm for my achievements’, above a smiley face, and below that is says, ‘PROUD’.

She had put such a lot of hard work into writing it, not only revisiting her past and facing up to all the challenges she’d been through having Tuberous Sclerosis and LAM, but researching about those conditions to inform families and people affected by them, and the general public who probably had never heard of TS and LAM. We hadn’t until she developed them either . . .

On her way, she was supported by Dr Sam Amin who ran the Metformin trial at the Bath TSC clinic, which Zoë took part in. He kindly wrote the Foreword, and said:

‘I recall her positivity and determination not to be defined or limited by the condition which affected so many aspects of her life’ . . . ‘I cannot stress enough how important Zoë’s coping mechanisms have been in surmounting all the hurdles she has been faced with’ . . .’Zoë’s book has given me a deeper insight into TSC, from a different angle’.

Zoë also had the kind support from TSA CEO, Louise Fish, who read through the book before it was published, and Gill Hollis and Professor Anne Tattersfield who proof-read the sections on LAM.

Yes, she was so proud that she had got to the end, and we are very proud of her for writing it.

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