Without research, effective treatments will never be able to reach the people who need them most.
Did you know
research for childhood dementias is slowing down globally? Less and less projects have been funded over recent years according to a recent report by the Childhood Dementia Initiative (CDI).
CDI is an organisation that has put a major spotlight on children living with dementia. As NP-C disease can have childhood dementia symptoms, our community is one of over 145 diseases that are advocated for by CDI.
Their recent report suggests that rare disease research has been somewhat neglected on a global scale when compared to childhood cancers (which are said to cause a similar number of deaths per year in Australia as childhood dementias).
In this report they not only found very limited opportunities for children to enrol in clinical trials, but that the rate of global trials for childhood dementias overall had decreased in the last 5 years.
Fewer new clinical trials mean less opportunities for new treatments to save or preserve lives.
In their report, CDI listed a range of formal recommendations that could help address this major issue.
But what can we do as everyday people? As parents, friends or family members?
My answer: Keep spreading the word about Niemann Pick disease and childhood dementias.
If people don’t know about the condition, then they aren’t likely to want to support us, donate or tell others.
Without donations, the ANPDF struggle to raise funds needed to support research in Australia, like Dr Ya Hui Hung’s NP-C research at The Florey in Melbourne.
EVERYONE can help raise awareness.
It’s unlikely a lot of people you bump into will have heard about NPD. This means the responsibility of sharing information may likely fall on you.
So, when we meet someone (such as a new friend, school teacher or GP) who hasn’t heard of NPD and is curious, I believe we should try our best to educate them on what this condition is. Or, you can direct them to our ANPDF website to learn more.
Organisations such as the CDI, Rare Voices Australia and the Genetic Support Network of Victoria also build awareness of rare diseases by continuing to advocate for and support rare disease communities.
I believe our continued advocacy, education and engagement with decision-makers, health professionals and the public can make a difference. These cumulative efforts will hopefully lead to more awareness and funding which could support the development of better NPD treatments and get us closer to a cure.
If everyone tries to do their part, there is hope! And hope is a powerful thing to hold onto.
Stay supportive and supported,
Ellie
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