Running for rare

In 2024 Stephanie Hunink decided to challenge herself to her first marathon. She had taken up running at the beginning of Covid during lockdown in Amsterdam where she lives. She developed a love for the sport.

“I enjoyed the freedom it gave from being cooped up inside the whole day with a young toddler at the time,” says Stephanie.

“Almost 5 years later I still enjoy every run I go on and I’m hoping this will continue for many years to come.”

Once Stephanie had secured her spot at the Rotterdam Marathon, she thought raising money for a charity would be a great way to put a bit of extra pressure on herself to see it through. Choosing which charity though took some consideration.

“I did not have a charity in mind, or one that was particularly close to my heart. Many of the big charities often get large donations and have many people running to raise money for them and I thought if I were to run for a charity, I would want it to be one that meant something to me personally.”

“Whilst midway through my marathon training plan my sister-in-law had posted a link to Rare Disorders NZ on her LinkedIn and in this post, she had mentioned that the charity had been a great support to them whilst navigating the unknown of having a child with a rare disorder.”

“I was able to go to NZ and visit my brother and his family in February 2024 and got to spend some time with them all."

"It was then that I realised Rare Disorders NZ would be an extremely fitting charity to run for and something close to mine and my family's heart." 

“Charities like this one can be a ‘village’ for people living with a rare disorder or for people taking care of someone with a rare disorder. We all need a ‘village’!” says Stephanie.

Stephanie’s fundraising resulted in an impressive €4,680 (approx. NZ$ 8,500) for Rare Disorders NZ, one of the largest amounts an individual has raised for the small charity.

“I was extremely surprised by the amount raised. Once I started the page, I had an amount in mind that I wanted to raise, however, what was raised far exceeded my expectations. At the same time, I really felt the pressure to now actually be able to complete the full marathon,” says Stephanie.

About 3 weeks prior to the event Stephanie injured herself and was in tears as she thought she was not going to be able to run and had already raised a considerable amount of money.

“I couldn't bear the thought of having to inform everyone that had already donated that I may have to pull out. Luckily, through lots of rest and visits to my physio I was able to finish the marathon in 4hr and 8 minutes,” says Stephanie.

For Stephanie, running is a pleasure as it allows her time to think, be on her own and enjoy her surroundings. Having a charity to run for at her first marathon helped push her through the later stages of the training when the distances started increasing and the runs became longer.

“Every time I went out, I knew I was doing it for something, for someone."

"This sounds extremely cliché, but the training and the actual run is nothing compared to the daily challenges some people living with a rare disorder may face. That thought is what kept me going.”

For others considering running to raise funds for a charity, Stephanie recommends finding a cause that is close to your heart.

"It may give you the extra push you need.”