Celebrate World Huntington’s Awareness Month with Maple
Join the Huntington’s community during May to celebrate World Huntington’s Awareness Month!
Each year the global Huntington’s community unites during the month of May in a shared mission to raise awareness for the disease. May 15th is International Huntington’s Disease Awareness Day where patients, caregivers, family and friends come together to raise awareness for their loved ones.
Huntington’s disease is a rare, inherited disease that causes the degeneration of nerve cells in the brain. Although there is currently no cure, there is a lot we can do to raise awareness around the disease and by celebrating World Huntington’s Awareness Month with us, you can too!
However gradual it sometimes presents, Huntington’s disease can be a debilitating and frightening illness for those living with it as well as their loved ones. The neurodegenerative disorder is thought to affect three to seven per every 100,000 people of European ancestry. People with Huntington’s disease deserve to be celebrated, recognised, and advocated for.
How will you be celebrating World Huntington’s Awareness Month?
Why is World Huntington’s Awareness Month Celebrated?
The more people who understand Huntington’s disease the more they can accept those who are impacted by it and extend their support.
The importance of awareness surrounding uncommon disorders may not be described any better than with the history of HD. It is widely believed that many of the victims in the infamous witch trials across the North East USA during the 17th century were in fact sufferers of Huntington’s Disease. The uncontrollable involuntary movements and peculiar behaviour were interpreted as being possessed by the devil and many sufferers were brutally executed.
An American Physician, Dr George Huntington contributed the first most accurate clinical description of the disease in 1872 at the age of 22. Then the disease was categorised simply under hereditary chorea which is a neurological disorder characterised by jerky involuntary movements and is one of several known symptoms of the disease.
Huntington’s disease is a fatal genetic disorder. It has a significant impact on a person’s functional abilities that result in movement, cognitive and psychiatric deterioration. The medical account of George Huntington played an incredibly important role in defining this ‘medical curiosity’ that came to be known as Huntington’s chorea and in the late 1960’s renamed Huntington’s disease.
The comprehensive clarity and accuracy of George Huntington’s description of the disorder encouraged thorough studies over the last century and his medical paper helped to reveal and diagnose the disease in many parts of the world.
How to Celebrate World Huntington’s Awareness Month
Talk about it
Talking about mental health plays a huge part in reducing stigma. Bring up the subject with family, friends or co-workers about World Bipolar Day and share facts that you have learned. You could also include it in your email signature or share information on your social media.
Share your story
Sharing our stories is one of the best ways to reduce stigma and create a better world of understanding. Although it can make us vulnerable, it can also generate support. You don’t have to do it during the month of May specifically but you may find it a good time to start. If public speaking isn’t for you, you could reach out to a local publication or a reputable blog where you can share your story anonymously.
Join events or fundraisers
Celebrate and advocate by joining events or fundraisers. Look for events near you to join or volunteer with or create one yourself. This could simply be a get together for like minded people willing to learn and share stories, or elaborate events aimed at raising money for the cause. Reach out to local mental health associations to find out if they have any events happening.
Support groups
Support groups can be a great way to connect with others. Everyone’s experience will be unique but it’s important to receive assurance that you are not alone. There is a lot of power in sharing your story and hearing others perspectives. You can also learn how others are managing the disorder and share tips that might work for you.
#LetsTalkAboutHD is a social media initiative run by HDSA (Huntington’s Disease Society of America) that takes place during Huntington’s Disease Awareness Month in May to drive conversation and support. Help families share their experiences through a narrative, videos and photos on social media and get involved to support the fight against Huntington’s disease.
#LightItUp4HD sees many significant places of interest such as buildings, monuments and statues light up their premises with blue light – for Huntington’s disease and purple light – for Juvenile HD during the month of May to help raise awareness.
Events for World Huntington’s Awareness Month
High Tea 4 HD NSW
A high tea is being held for awareness of HD by the Huntington’s NSW Act bring your family and friends together for an afternoon of delicious food, tea and bubbles. With raffles and fabulous prizes be sure to secure your tickets soon.
Orange – Sunday 8th May at 11am or Penrith – Sunday 22nd May at 12pm
Go Blue on May 22
A fun way to get involved with Huntington’s Victoria, you can interpret ‘Go Blue’ any way you want:
- Wear blue clothing
- Dye your hair blue
- Decorate your home or office in blue
Whatever you decide to do, get creative and help us raise much needed awareness of Huntington’s disease. Post your #GoBlueonMay22 on social media, host an event with family friends or your local sports club and download resources to help you organise your Go blue event.
Move 4 HD with Huntington’s Victoria
“Move 4 HD is a unique gathering that aims to encourage our community to participate in physical, cognitive and social activity, all of which have been shown by research to slow and delay the progression of HD symptoms. In an afternoon of dance fitness, this awareness raising event will celebrate a person’s ability to move and shift our focus from inability to ability.”.
Join their OPAcise and ZUMBA class welcome to all abilities on Saturday 15th May online or in person in Yarraville.
Gala Ball
Huntington’s Victoria organises a fundraising gala ball every year to raise funds for their services attracting over 350 guests including specialists, researchers, professionals, corporations and friends. This year it is being held on Friday 6th May in Melbourne.