A leading health charity is urging young people to switch off their mobile phone for 24 hours to raise awareness of work ongoing to find a cure for Huntington’s disease (HD).
The Scottish Huntington’s Association (SHA) has written to schools in Dumfries and Galloway and have started a social media campaign urging students to forego emails, texts, tweets, or social media on November 21.
“The campaign will raise awareness of the first few patients who have received the ‘gene silencing’ drug which is potentially the start of a major breakthrough in treatment of the incurable hereditary brain condition,” said SHA community fundraising coordinator, Linda Byars.
“We are challenging young people, their peers and schools to “SHAwitch Off” their mobile phones for 24 hours and instead share some face to face time with family and friends .”
HD is a progressive condition that causes changes to muscle control, thinking processes and can cause long-term mental health issues. The average age of onset is between 33 and 45 and those living with the condition will require 24 hour care as it progresses into its later stages. Each child of someone diagnosed with HD is at 50% risk of developing the condition themselves.
There are estimated to be 1,100 people in Scotland living with the condition but as many as 5,000 could be potentially at risk.
SHA is the only charity in the country that works with families affected by the disease providing lifeline services, including specialist nurses and the world’s only HD youth support service.
“We are looking for as many people as possible to ‘SHAwitch off’ to raise funds to help us continue to provide specialist health and social care staff and a wide range of support services to families and individuals living with HD,” added Linda.
Fundraising packs are available to help people taking part maximise both their fundraising and awareness raising efforts.
Contact linda.byars@hdscotland.org for more information about how to get involved.
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