Media campaigns

We aim to get as much publicity as possible to raise awareness of SMA and to show the need for the provision of treatment for children and adults with all types of SMA.

Earlier this year we started a media campaign aimed at highlighting the urgent need for swift access to treatment under the Spinraza Expanded Access Programme for all babies and children with SMA type 1. We encouraged families of children with SMA type 1 who wished to tell their story to the media to do so. Many amazing families contacted the media and some of the stories can be found on this page.

https://www.hastingsobserver.co.uk/news/hastings-family-of-toddler-with-life-limiting-condition-call-for-specialist-drug-to-be-more-widely-available-1-7951789/

Latest posts

  • 2023 Worldwide Pressure Injury Prevention Day

    2023 Worldwide Pressure Injury Prevention Day

    Today is ‘Worldwide Stop The Pressure Day’ The objective this day is to increase awareness about pressure injury prevention and to educate the public on this topic. Please see the link for more info and a short video on statistics. 2023WWPIPD – National Pressure Injury Advisory Panel (npiap.com)

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  • UpLift EMPOWER Marketing with Martyn Sibley from Purple Goat Agency

    UpLift EMPOWER Marketing with Martyn Sibley from Purple Goat Agency

    Tonight Pathfinders are hosting UpLift EMPOWER Marketing with Martyn Sibley from Purple Goat Agency – an event you don’t want to miss! Limited spaces for young people with a muscle weakening condition. 📆 Tuesday 7th November 2023 ⌚ 18:00 – 19:00 📍 Online Webinar 💷 FREE 📝 Sign up – https://UpLiftEMPOWER.eventbrite.co.uk Are you aged 18-30?…

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  • Happy Purple Tuesday!

    Happy Purple Tuesday!

    Purple Tuesday is a global social movement and the number one brand for improving the customer experience for disabled people and their families 365 days a year. This includes accessibility and in inclusivity for disabled consumers. Quoted from the ‘Purple Tuesday’ website “The initiative inspires leadership and staff of organisations from all sectors and sizes…

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