I am sharing the email below that I received today from Sue Millman, Chief Executive of Ataxia UK in which she urges everyone to contact their MP, friends and family to sign the Ataxia UK open letter to allow urgent access to the first licence treatment for Friedreich’s Ataxia.
This is a very important message that I would urge all my readers to react to. Thank you for your support as always.
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Help us call on the Government to deliver urgent access to the first licensed treatment for Friedreich’s ataxia.
Last year, more than 11,000 people signed our open letter calling for access to omaveloxolone, known as Omav, the first licensed treatment that can slow the progression of Friedreich’s ataxia (FA). Our new Prime Minister, Andy Burnham, then Mayor of Greater Manchester, was among those who signed. That is why we are writing to him now, asking him to stand with the FA community once again.
The extraordinary support for our #AccessOmavNow campaign helped us make real progress, but people with FA and families are still waiting.
On 1 July, Ataxia UK brought families, experts and MPs from across the political spectrum together in Parliament. At the event, 26 MPs and peers heard first-hand about the devastating impact of delayed access and the urgent need for action.
We, together with our supportive MPs, have now written directly to the Prime Minister, calling on the Government to establish an urgent interim access pathway for Omav and reform how treatments for rare diseases are assessed.
Please stand with our community again by adding your name.
READ AND SIGN OUR OPEN LETTER HERE
Your MP can also help keep this issue firmly on the Government’s agenda. Find your local MP and ask them to support urgent access to Omav.
FIND YOUR MP HERE
Please share our open letter with your family, friends, colleagues and wider community. Every new signature makes our collective voice stronger.
You can also share this blog with friends and family on Social Media.
You helped us take this campaign to Parliament. Now help us take our message directly to the Prime Minister.
Please sign and share today.
With sincere thanks,
Sue Millman
Chief Executive
Ataxia UK
