[Malcolm Long]

Hi Ray,

DMF is currently listed on the FARA research pipeline spreadsheet

https://curefa.org/pipeline?utm_source=FA&utm_campaign=6a109b620c-RSS_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_ae7feab64b-6a109b620c-71573145

as under test, along with other items.

Great to hear it has had a positive result for others but IMO frustrating that testing known drugs is so protracted vs the quick use of known drugs for COVID.

[Malcolm Long]

Having seen how the selection was done for participants in the trial, it required someone of paralympic standard recumbant cycling ability with corresponding breathing and endurance. Whilst being hopeful and grateful for any company pursuing a treatment I do wonder how effective it will be for the vast majority that couldn’t achieve the lofty selection criteria.
Fingers crossed as anything that could just slow down or halt FA progress whilst other lines of research maybe provide better therapy or even cure would be beneficial and provide hope for the future.
I find myself comparing the speed of Covid drug repurposing and vaccine testing with the protracted testing times we have, especially for the former. I’ve never seen bespoke testing for many other drugs that are just used, say in an emergency (e.g. painkillers) or if it was a condition the drug could be used for in itself (say psoriasis for DMF…..).

[Malcolm Long]

My daughter failed to get onto the trial as she couldn’t pedal a recumbent bike to exhaustion. My concern is the trial is being based on the equivalent of ‘paralympic’ performance and may be skewing results. Hopefully not and the reports and good effects will apply to everyone whatever their FA status.

[Malcolm Long]

Hi All,
Just registered today and have been following progress on etravirine as well as Diazoxide. Both these have been picked up for research:

• Diazoxide (Carlo Marobbio, Bari, Italy) – mitochondrial K channel activator that
increases frataxin expression
• Dimethyl fumarate (DMF) and Resveratrol (Gino Cortopassi, UC Davis) – to
increase frataxin expression
• Etravirine (Alessandra Rufini and Roberto Testi, ‘Fratagene’, University of Rome
Tor Vergata) – to increase frataxin expression

Above documented by Brunel University in London.