Over the weekend, we spoke to Julie Flygare at Project Sleep and said that we would like to help her with this petition as we feel as strongly as her about yet another terrible depiction of narcolepsy.
It’s not just about the end result though, the NBC perspective that they arrived at a positive depiction without liaising with any sleep experts or members of the narcolepsy community is incredibly disappointing and insulting.
Many of you met Julie when she attended our 2019 annual conference where we launched our Narcolepsy Charter asking for recognition & respect for the rights of people with narcolepsy as set out in the Charter. Julie has always been a huge supporter of our work as well as a good friend so it seems fitting that we add our collective & individual voices to her petition and stand with the narcolepsy community to call for representation that is accurate and reflective of real-life symptoms and stories and once again, turn the statements within our Charter into positive actions in the real world.
Excerpt from Narcolepsy UK Charter
1. People with narcolepsy have the right to live in a society that understands and recognises the impact of narcolepsy on themselves and their families and carers
• Ability to talk about narcolepsy without fear of judgement or discrimination
• Sensitive and accurate media coverage
• Research about the causes and impact of narcolepsy
Please click on the petition link in the first sentence and let’s see if we can work together to make some positive change.
