Kirkcaldy and Cowdenbeath MP, Roger Mullin, has highlighted the work of the Scottish Huntington’s Association Youth Project (SHAYP) at Westminster.
SHAYP supports around 150 young people from all over the country living in families affected by the degenerative brain condition Huntington’s disease (HD).
The early day motion presented to Parliament attracted 27 signed supporters and acknowledges the valuable work the SHAYP team does to help young people understand HD and the implications the disease may have for them.
Chloe Forbes (14) from Kirkcaldy helped persuade Mr Mullin to raise the motion of support after telling him how much she relied on the services of the team.
“The more people that know about HD the more awareness there will be about how it affects people. The support I get from the SHAYP team is fantastic and they deserve this recognition, I hope it helps spread the word about the great work they do for me and others,” she said.
SHAYP organises an annual camp, along with ongoing group and individual support sessions for families.
HD is a hereditary progressive condition that causes changes to muscle control, thinking processes and may cause long-term mental health issues. 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.
“It was wonderful to meet with Chloe and her youth worker, Peter, to hear about the excellent work undertaken by Scottish Huntington’s Association. They are a tremendous source of support for children and young people affected by Huntington’s disease, and it was a privilege to hear their stories and understand how I could raise awareness of the benefit youth work has in terms of the development of young people, their educational achievement, and their general well-being,” said Roger.
“The service provided by Scottish Huntington’s Association Youth Project is a fantastic resource for children and young people, and I hope the organisation can continue to offer this vital support to those affected by the disease.”
More information on the work of the SHAYP can be found at www.hdscotland.org