It is summer and all of a sudden it feels like the whole world stops for a second. It is like everything and everyone becomes quiet, looks around, drops what they got in their hands and says: “I’m going on a vacation”.

Written by Maiken Arnesen

Maiken Arnesen, Photo: private

Don’t get me wrong – I love the summer – but this time of the year can give me a feeling that those things that mattered in May, isn’t that important in July, that the world doesn’t care anymore and that the only valid reply is: “Mañana, mañana”.

Even though feelings are great and function as important guidelines in everyday life – they can be equally wrong and misguiding. And that’s why I decided to take my own emotions under inspection.

“You will not be sick”

When my mom decided to become a mother she was still at risk of developing Huntington’s disease.  When I was little we always talked about the disease: what it was, that she had a fifty percent risk of developing it and that she might – might – get sick in her 40s, 50s or 60s.

But we also talked about research that was being done and that it most likely would be a cure within ten years. When I asked her this summer how she had the courage to be woman enough to get a child when being at risk, she replied: “Because I was sure that when the time came, and you and your sister would be in your 40s, 50s or 60s, you wouldn’t get sick”.

My sister is now 25, I’m 23. And there is still no cure.

The ten year mantra

After detecting the gene in 1993, it is like ten years have been the mantra: it was said then, said again in 2003 and again in 2013. Are we going to say the same thing in 2023? Truth is: I don’t know.

But what I know is that the steady shift of destination is not because researchers are on a holiday – even though it’s summer. I know that the HD community is lucky in so many ways: lucky because we have a donor donating millions to HD research, lucky because there are so many people working around the clock to find a cure, lucky because even though we’re affected by a rare disease we have a strong community.

Small steps, one giant leap

I remember when I started studying psychology and my professor talked about the ‘Einstein-effect’ – not when describing people but when describing research. It is the eureka view some people have on research; that one study will change everything, that we will go from no cure to a cure in one day.

That’s unfortunately not how research works. It is small steps across the board – but similar to what Neil Armstrong said: small steps make up one giant leap.

So when it comes down to a cure, the best thing we can do is to believe in research, still say to our self and those around us: “in ten years – or not even ten – we will have a cure”.

Because we have been taken many small steps – and one day they will make up one giant leap. Because there is one thing I’ve learned: research does not care if it is summer.