Christina Strong speaks to Twopresents about the charity she founded in memory of her son, Joshua.
Could you tell us a little about the Joshua Hellmann Foundation for Orphan Disease?
I founded the Joshua Hellmann Foundation for Orphan Disease in Hong Kong in 2008, in honour of my son, Joshua, who lived an active and inspirational life for 15 years before he passed away after a courageous five year battle with Melas Syndrome – an ‘orphan disease’ defined medically as a rare disease, a genetic mutation condition that is being actively researched by clinical specialists.
I understand the suffering families go through when a child is suddenly impaired and I’m aware of the struggles people living with a rare disease and their families face. I am familiar with the overarching loneliness felt in battling a rare disease and the frustration of the long and difficult diagnosis, as doctors lack knowledge on and exposure to such diseases. Rare disease patients often don’t have access to effective, up-to-date treatments.
‘Rare’ is a word most often used to convey the same values as ‘precious’… unique… valuable. And if one adds up all of us precious beings that suffer from a ‘rare’ disease, the number is staggering – 60,000,000 and counting.
What are the goals of the Joshua Hellmann Foundation?
The JHF is a charity foundation offering support to children and families with children with rare or ‘orphan’ diseases. JHF focuses on 4 pillars:
- Awareness: Educating the public and expectant parents about the potential fatal nature of rare diseases if left undiagnosed. Advocating the importance of Newborn Screening (NBS).
- Diagnosis: Sponsoring diagnostic tests for affected children regardless of socio-economic background. Promoting clinical and laboratory diagnostic services.
- Treatment & Research: Bringing lasting expertise to Hong Kong through hosting medical exchange conferences to share the latest research and treatment in rare disease management.
- Improve Welfare: Delivering ‘Art In Your Life’ — an expressive arts and yoga therapy program to reduce stress and improve quality of life for children with rare diseases and a wide range of special needs.
Our mission is to advance the awareness, diagnosis, treatment and research of orphan disease, and improve the welfare of children with orphan diseases in Hong Kong.
How are you raising awareness and diagnosis for orphan disease?
We do this by funding diagnostics overseas for children from 0 – 19 years old with a suspected orphan disease, raising awareness by organizing medical symposiums (so far five major ones with international specialists from Australia, US, Europe, UK and Japan together with the Hong Kong University Queen Mary Hospital HKU, and Chinese University of Hong Kong Prince of Wales Hospital CUHK) and providing support for families that have been affected.
Most recently we are focusing on lobbying the government to implement a Newborn Screening Program which we sponsored in July 2013 as a pilot program together with the Chinese University of Hong Kong and the Prince of Wales Hospital. Our current objective is that when Hong Kong’s first paediatric hospital opens in 2018, we will have a laboratory dedicated to identifying rare diseases and that all 40,000 babies born annually in Hong Kong will receive Newborn Screening funded by the Hong Kong Government.