#LightItUp4HDMay is International Huntington’s Awareness Month and we are wanting to spread the word and educate Western Australians about the disease and how they can help families affected by this devastating disease.
This May we will be illuminating the Bell Tower and Elizabeth Quay in Perth City and the Trafalgar Bridge in East Perth on Saturday 5 May and Sunday 6 May to raise the visibility of Huntington’s disease (HD) and Juvenile Huntington’s disease (JHD) in blue and purple lights respectively.
#LightItUp4HD started in Canada in 2015 to raise awareness about Huntington’s disease.
Through the hard work and dedication of volunteers spreading the word about Huntington’s disease Australia, Scotland, Germany, Spain, Ireland, UK, the United States and Cyprus are joining in #LightItUp4HD this May.
Huntington’s disease is a debilitating brain disorder that is fatal and incurable. About 1 in 8,000 Western Australians are impacted by HD. This includes not only those who have been diagnosed with HD, but those at risk of developing the disease and still others who are touched by Huntington’s whether as a caregiver, a family member, or a friend.
Huntington’s disease causes cells in specific parts of the brain to die. As the disease progresses, a person with HD becomes less able to manage movements, recall events, make decisions and control emotions. The disease leads to incapacitation and, eventually, death. Many describe the symptoms of HD as having MND, Parkinson’s and Alzheimer’s – simultaneously.
For many years Huntington’s disease has been kept secret in families due to stigma and discrimination.
#LightItUp4HD is an opportunity to raise awareness, make connections, garner support from Western Australians and move forward with pride and dignity.
“Lighting up our iconic buildings in the colour representative of HD and JHD is a great way to gain a better understanding of the impact of HD on generations of families”: says Huntington’s WA Board member Ann Jones. “It means so much to families impacted by HD to not only see recognition of HD in Perth city but also throughout Australia as well as around the world”.
Huntington’s WA wants Western Australians to find out more about HD. More people finding out about the disease will mean those families impacted by HD will feel better supported and their needs understood.
Huntington’s WA is the leading community services organisation dedicated to providing support and advocacy for Western Australians impacted by Huntington’s disease.
Media contact: Ann Jones Mob: 0437 949 606