Christina Hellmann, the force behind the Joshua Hellmann Foundation, works tirelessly towards the day when rare and orphan diseases can be quickly diagnosed and treated in Hong Kong. Riva Hiranand reports.
Christina Hellmann is, as she puts, “crazy busy”. Between her daily work with the Joshua Hellmann Foundation for Orphan Diseases and taking care of her two daughters, she is organising a major fundraiser, “the first time since 2010 we are putting on a gala!” she exclaims breathlessly, apologising for the frantic circumstances of our meeting. “But for me, this isn’t a job – I’m not employed, the foundation is my baby. When you have a personal connection to the cause, the way you work is different.”
This is indeed a personal cause for Hellmann; the foundation was set up in memory of her son, Joshua, who died in 2007 from Melas syndrome, a rare mitochondrial disease. “I didn’t know what an orphan disease was before Joshua was diagnosed, let alone a metabolic or mitochondrial disease,” says Hellmann, who since Joshua’s passing has dedicated herself to learning more about orphan diseases – so named as they have been ‘orphaned’ from the pharmaceutical and medical fields due to their obscurity. Establishing the Joshua Hellmann Foundation in 2008, she has tirelessly campaigned to raise awareness about rare diseases and help underprivileged families afford diagnosis and treatment for their children, as well as work with leading medical professionals to research rare and orphan diseases.
BACCARAT: Why is it so crucial to raise awareness for rare and orphan diseases?
CHRISTINA HELLMANN: Until Joshua was diagnosed, I didn’t know much about rare diseases. Unfortunately, despite the name, rare diseases are not as rare as one might think. About 20,000-30,000 children in Hong Kong currently have a rare disease, and one in 10,000 children is affected worldwide.
How do you help children suffering from orphan diseases?
I want to give children the same opportunity my son had – access to diagnostic tests and medical professionals. Unfortunately Hong Kong is very underdeveloped medically, and so we bring in world-renowned specialists and hold seminars and conferences to educate people. We support families who cannot afford diagnostic tests, helping them get the care they need, even when the tests need to be done overseas.
What does the foundation require most?
Hong Kong needs both a platform for family support and a public database listing what patients suffer from which diseases – the problem here is that hospitals, even through the Hospital Authority, don’t work together. We also need to raise awareness, so families can realise a rare disease exists and medical staff can recognise the symptoms, especially in teenagers where you have to be especially wary: if they are obvious symptoms, treatment can be administered immediately, but if they are subtle it can be difficult. It comes down to training and awareness, so doctors understand there is a possibility of a rare disease, as opposed to ignoring its existence.
What have been the foundation’s key achievements so far?
We joined the Clinton Global Initiative in 2008, which was a huge step. This year I was a guest speaker at the Euromit in Finland, a world congress on rare disease, where I connected with medical professionals. I’m very proud that we launched the newborn screening programme at the Prince of Wales Hospital in conjunction with Chinese University of Hong Kong. It gives all newborns the chance to be diagnosed for up to 35 metabolic diseases, up from only three. In less than a year, we have diagnosed more than 6,000 children. Most of the diseases can be cured or prevented if detected and diagnosed that early.
Any initiatives that you have been particularly fond of?
Last year, we partnered with an art programme called Art in Your Life (www.artinyourlife.org), which is a themed workshop that incorporates art and yoga sessions to help develop creativity, verbal and social skills and body awareness in children with special needs or orphan diseases. It is an incredible initiative, and we loved being a part of it as we helped so many children! The workshop was helmed by specialists such as Julia Byrne, an art therapist at City University, and yoga teachers Margaret Chung and Hersha Harilela Chellaram.
Is there anything you would like to change about charity work?
We are a very small foundation, so our fundraisers aren’t huge. Our last one was in 2010. During a fancy ball with fun entertainment, great food and drinks, people often forget the reason they have come together. What is most important is the cause, and helping those in need. I don’t want to waste exorbitant amounts of money on food, wine and decor. People should give money to make a difference, not to indulge.
What is the key message you would like to spread?
Our motto is ‘together we are not rare’ and I think this applies not only to the foundation but also to our donors, who have been with us from the beginning. Family support is very important, and our fundraiser is like a big family gathering: it is always at Gaia, Joshua’s favourite restaurant, and [proprietor] Pino [Piano] is like family to us. Michele Li of the Wedding Company has been organising it from day one. We are very lucky to have people continue to support us – it is very meaningful.
What are your future goals?
We want to organise an event in Hong Kong at the end of next February to mark World Rare Diseases Day, and we are lobbying the government for a laboratory for rare diseases in the new paediatric hospital to open in East Kowloon in 2018. We are also hoping to raise enough money to test for congenital hereditary hearing loss in children.For more information and to see how you can help, visit www.jhforphandisease.org