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The reality of Huntington’s disease beyond textbooks

5 July, 2019

Ranjana Varma went into her McCusker Centre for Citizenship internship at Huntington’s WA with two simple goals: to gain some experience and broaden her skillset.

She never imagined she would discover her professional life’s purpose.

The University of WA Bachelor of Science student said she was now considering applying for honours specifically to research Huntington’s disease.

“The organisation and its community has become very close to me,” Ms Varma said.

“What I learnt and experienced on my internship will stay with me for a long time.”

It comes as no surprise that Ms Varma (20) developed a close connection to the not-for-profit organisation’s fundraising efforts – as she was instrumental in making International Huntington’s Disease Awareness Month its most successful yet.

As the communication and marketing intern, she promoted the Light It Up for HD campaign in which buildings, monuments and statues were illuminated in blue and purple during the month of May to raise the visibility of Huntington’s and Juvenile Huntington’s disease.

Huntington’s WA executive director and intern supervisor Lenni Duffield said Ms Varma coordinated the launch event, ran all marketing, advertising and community engagement and posted updates to their social media.

“Due to Ranj’s efforts we had more sites agree to light up this year as well as an overwhelming response to our Light It Up launch event,” Ms Duffield said.

“The night was a huge success which not only raised vital funds to support our cause but also much needed awareness.

“For a small not-for-profit to have the opportunity to host an intern to support the mission and work we deliver to our community has been an invaluable experience for both our team and our intern.”

Ms Varma also coordinated the Dynamic Huntington’s Heroes Team for the HBF Run for a Reason on May 19; designing the team t-shirt, writing press releases, liaising with its corporate sponsor, running attendance communications, updating social media and posting Facebook blogs about the team.

The 47 Dynamic Huntington’s Heroes Team members raised $9,226 for Huntington’s WA.

Ms Varma said meeting people with Huntington’s and seeing the “real-life effects” of the disease had a huge impact on her.

“I knew all the science behind it from my studies,” she said. 

“When you read about it in a textbook, it might just say ‘impaired cognition’ under symptoms.

“But then, when I actually met someone with Huntington’s and saw for myself what ‘impaired cognition’ really means … that was completely different. To see them struggling to do everyday things that we take for granted, like walking straight or picking up a spoon to eat with. It really broke my heart.”

Ms Varma said her internship gave her the opportunity to directly contribute to raising awareness about Huntington’s disease.

“It is frustrating that so many people don’t know about the disease,” she said.

“Being an intern at Huntington’s WA gave me such insight into Huntington’s disease beyond the medical definition – I saw how it really impacts people’s lives.

“My internship opened my eyes to how supportive and close-knit the community is and how much they rely on one another. It made me want to be involved in helping them further. It is very personal to me.”

Ms Varma said an internship with the McCusker Centre for Citizenship would inspire any UWA student to feel passionate about social issues.

“I would recommend it to anyone,” she said.