Children’s charity Action Medical Research has raised £1.2 million through its ‘Never got to’ rare disease campaign to help fund groundbreaking research into rare conditions affecting children and their families. For this year’s Giving Tuesday, they are asking everyone to think about which causes are important to them and how they can make a difference by donating money, goods or their time.
Around 95% of rare diseases have no effective treatment or cure and 30% of children with a rare disease will lose their lives before their fifth birthday. For families facing a life-changing diagnosis, medical research gives hope – hope for new treatments, hope for a cure and hope that in the future no family will have to go through the heartbreak of losing a child to a rare disease.
Sally, mum of 12-year-old Danny, is painfully aware that time with her son will be cruelly cut short by Hunter syndrome.
She said: “Just like that, everything is ripped away. All hopes and dreams for your child gone.
“Each new development brings real hope – and that is worth fighting for, so that families in the future don’t have to feel that the bottom is dropping out of their world.”
“The £1.2 million we have raised so far has shown us that when people come together they can make great things happen. Thanks to this support we can continue to fund vital research to develop treatments and potential cures for some devastating and often life-limiting rare diseases. This is the power of generosity and we are incredibly grateful to our donors and partners who share our commitment to funding groundbreaking research.”
Giving Tuesday is an international movement dedicated to helping charities like Action Medical Research raise vital funds, recruit volunteers, or raise awareness about the most pressing social issues. This year it will take place on 3rd December, with more than 100 countries participating.
“This impressive achievement shows us how small acts of generosity can add up and become a force for good that transforms people’s lives. This Giving Tuesday is an opportunity for everyone to decide how they want to change the world and do one thing to make it happen. Whether you choose to donate to charities like Action Medical Research, drop off a donation at your local foodbank, or lend your voice to a campaign – even the smallest act of kindness can make a huge difference.”
About Action Medical Research
Action Medical Research is the leading UK-wide charity dedicated to saving and changing children’s lives through medical research. For over 70 years they’ve helped pioneer ways to prevent disease and develop treatments benefiting millions of people. Their research has helped to beat polio in the UK, develop ultrasound in pregnancy, fight meningitis and prevent stillbirths. But they urgently need to develop more new treatments and cures for sick babies and children and they can’t do it without you.
Website: action.org.uk
Follow on social media: @actionmedres
