Sign up to our Time is Muscle WhatsApp group to stay involved in the campaign
It was in January that we met the Secretary of State for Health and Social Care, the Right Hon Wes Streeting MP, to tell him about the desperate state of unfairness that exists for families living with Duchenne muscular dystrophy (DMD) in the UK right now. A drug is being offered for free, but families cannot access it, because hospitals are struggling with resources.
100 patients dosed with givinostat through in Italy
In Italy more than 100 patients have been dosed with this free medicine. In the UK, it’s a handful.
AND it’s still only available for ambulant patients, even though the offer for non-ambulant patients is on the table.
Alex and I have been working tirelessly behind the scenes to make sure that this drug becomes available for all patients.
A great way to stay involved in the campaign
We hope to have some news to share with you in the coming weeks, but in the meantime, we urge families to sign up to our Time is Muscle campaign WhatsApp group and keep involved in the campaign.
You can send your phone number to Will at [email protected] if you’d like to join the WhatsApp group.
Patient power WORKS. Let’s get this done.
With love,
Emily and Alex xx