Olivia Sawano is the person behind the Huntington song “North Star – HD8890”. Throughout May, she has decided to donate the profits from the song to the European Huntington Association. Read an interview with the talented musician here.
Photo: One of the last photos taken of Olivia together with her father.
– How did you get involved in the Huntington community?
– My father was diagnosed with Huntington’s Disease (HD) in 2011. I then joined some HD young adults conferences in Germany where I met Michaela Winkelmann from Deutsche Huntington-Hilfe e.V. and we stayed in touch.
My father passed away in 2018 and I decided I wanted to do more to help raising awareness, so I joined theHD on the bike event in Frankfurt in 2019 to ride 100km. It was a wonderful event where I got to know Astri Arnesen, and Dina de Sousa from the European Huntington Association, and other lovely people from the HD community.
– Can you tell a little bit about North Star – HD 8890?
– Yes, sure! So, for people who don’t know me: I’m a German-Japanese songwriter, musician and choir leader from Cologne. It took me about 2 months to write North Star – HD 8890. I wanted to write a song that is hopeful and positive; a song that can make you smile but at the same time allows you to cry when you are sad; a song that is fun to sing together for adults and kids.
Listen to the song here: North Star – HD8890
When I was collecting ideas for the song, I found out that HD not only is the short form for Huntington’s disease but also for an old astronomical star catalogue (the so-called Henry Draper catalogue) classifying more than 200000 stars.
I thought it’s beautiful to associate HD not only with the disease but also with stars. Stepping outside, looking at the stars and taking a deep breath always makes us feel better. It’s kind of paradox but every time I look at the stars and become aware of my insignificance in this universe, at the same time I realize how precious and meaningful life is, no matter how hard it is sometimes. The North Star has always been a symbol of hope and because there’s no cure yet and we need to be hopeful, that’s how the song title was born. HD 8890is the star catalogue number for the North Star. It’s also a little hint that this song is dedicated to the HD community.
The North Star is 434 light years away from earth so its light we see today is 434 years old – that’s so fascinating! In a way, we shine our light, too – through our actions and through our love. It also stays long after we’re gone, just like starlight traveling through space even though the star itself might have disappeared already. In Japan, it is said that when people die, they become stars to watch over us. It’s beautiful to imagine that starlight is the love of our ancestors.
I also hid a little motto or slogan for the HD community in the lyrics:
It means: Look up at the stars and hold your head up high. Reach out to one another and also reach for the stars. Shine your light, make the best of your life and your light will shine on for a long, long time.
– How can we as a community raise awareness of Huntington’s disease?
– There are countless ways to raise awareness! If we want to reach people that have nothing to do with HD, it’s best to connect through a shared passion like music, sport, art, pets, hobbies – it could be anything. It’s also important to make the most out of social media like Instagram and Facebook, especially when trying to reach young people. In times of Corona, people are spending even more time on these platforms.
– Will you join the big ‘HD on the MOVE’ day 30th of May?
– YES! Somewhere in Germany, I will be riding 100km with my bike again.
Join our facebook event here: The Big ‘HD on the MOVE’ day