16 October 2015

How do you make what is not yet available, available?

Today, Friday 16th October, sees the launch of Sparks’ new campaign, Not Yet Available. The campaign, centring around empty medicine boxes, highlights the range of cures and treatments that don’t currently exist for over 4,000 rare childhood diseases.

We are asking our supporters to help us fill these boxes by texting ‘Fill’ to 70660 to make a one off donation of £3. The money raised will enable us to continue to fund some of the best medical research in the country and abroad.

New NYA BoxLindsey and Ben, whose son Zach was diagnosed with Krabbe disease, a rare neurodegenerative disease, when he was two years old, took part in the campaign. The couple say “You hear about rare diseases, but you don’t necessarily pay a lot of attention to them because they’re not personal to you. Even when Zach was diagnosed, it didn’t seem real. It doesn’t happen to you. Since his diagnosis, weave come across a lot more rare diseases. You just suddenly become more aware. Rare disease devastates families. That’s what it’s done to us. Our lives will never be the same again because of Zach having a rare disease.”

The ‘Not Yet Available’ campaign, created by Global advertising agency BBH London, aims to raise awareness of this critical issue as part of Sparks’ five year medical research strategy which prioritises rare disease as a key area for funding. Julia Ambler, Director of Medical Research at Sparks, said: ‘Earlier this year we asked the medical and research community where we should priorities our funding. Rare disease research came out strongly as both needing funding and having great potential to benefit from it. With additional funding, it’s an area we feel we can make a huge difference for the children who have these devastating rare diseases.’

According to Rare Disease UK (2015), there are over 4,000 rare childhood diseases without a cure or treatment. 30 per cent of children with a rare disease will die before they reach their fifth birthday. Without funding into children’s medical research, these numbers will not change.

You can help children like Zach and fund urgent research into rare diseases* by: 

  • Texting ‘FILL’ to 70660 to donate £3**

  • Donating online

  • Sharing the film on social media using #NotYetAvailable by clicking the buttons at the top of the page

*Your donation will enable Sparks to continue to fund children’s medical research.
**Your donation will be added to your mobile phone bill.  Text costs £3 plus network charge. Sparks receives 100% of your donation. Obtain bill payer’s permission. Supporter care 020 7091 7750 or info@sparks.org.uk. Charity No 1003825 (England and Wales) and SCO39482 (Scotland)