TruckSimFM Charity Day 2025!

We will come together to support the first ever

#COL6RELATEDMYOPATHY

Mark your calendar for the 6th of June 2025,

and join us in the efforts to support

the rare patient community and advance

the Global Collagen VI Network.

Participation and support are so crucial.

Why are we supporting this cause?

As owners of TruckSimFM Ajax & Pixie have a little boy called Ollie who has this very condition called Ulrich Muscular dystrophy so raising awareness and donation and supporting the charity in the just giving link will hopefully raise vital funds to finding a cure and it takes us one step closer to helping thousands of other col 6 patients around the globe.

What are we talking about?

A diagnosis of a rare disease from

COL6 deficiency is an extremely

difficult experience that puts even

the strongest person in the world

in a vulnerable condition.

Ullrich Muscular Dystrophy,

Bethlem Myopathy, Myosclerosis

and intermediate forms are

caused by mutations in the

COL6A1, COL6A2, COL6A3 genes.

Inheritance may be autosomal dominant or recessive.

All people worldwide!

Although precise incidence data

are lacking, the prevalence of

Ullrich CMD is 0.13 cases per 100,000

of the population,

and that of Bethlem myopathy

is 0.77 cases per 100,000.

72,900 cases globally estimated.

In the world there is no cure

Pathogenic mechanisms: mitochondrial

dysfunction, where impaired mitochondria

fail to generate energy, leading to muscle

cell death, and autophagy deficiency,

which prevents the cell from eliminating

damaged components, further

aggravating mitochondrial damage.

Cyclosporine A corrected mitochondrial

dysfunction by increasing muscle

regeneration and strength.

A pharmacological low-protein diet

activated autophagy in muscle and

leukocytes, leading to improvements in

some functional tests, muscle strength,

and respiratory function.

Gene therapy is an innovative

approach, currently in the research and

development phase, aimed at

correcting mutations, inhibiting or

replacing defective genes with the

correct ones, restoring cellular health

and function.

What we are doing?

24HR radio stream plus!!! A convoy join the link for all the information: https://truckersmp.com/events/28189 Convoy Link

Please join us on the 6th June 2025 for a full day of entertainment!

Please if you can donate to the below link Genetic Alliance UK

Just Giving Link

DONATE HERE

THANK YOU!