The Prime Minister has today recognised Danny and Zoe Thomas, from Northampton, for their exceptional service founding ‘Alfie Bear’s Journey Fund’.
The charity was set up in 2014 to raise awareness of the rare brain tumour condition Diffuse Intrinsic Pontine Glioma (DIPG) and to fundraise for ‘The Brain Tumour Charity’ in memory of their late son, Alfie.
Alfie tragically passed away in 2014 at the age of six after fighting a brave battle with DIPG, an incurable and inoperable rare childhood tumour that affects 40 children in the UK every year.
Through ‘Alfie Bear’s Journey Fund’, Danny and Zoe support other families living with DIPG and they have raised over £120,000 for ‘The Brain Tumour Charity’ through fundraising events including a large community picnic called Alfie Bear’s Picnic.
Danny and Zoe are the latest recipients of the Points of Light award, which recognises outstanding volunteers who are making a change in their community and inspiring others. Each day, someone, somewhere in the country is selected to receive the award to celebrate their remarkable achievements.
In a personal letter to Danny and Zoe, Prime Minister Theresa May said: "The strength you have shown since losing Alfie is truly inspiring. You have taken the worst tragedy imaginable and turned it into a commitment to raise awareness of DIPG and vital funds for brain tumour research.
"I wish you well as you continue your work."
Danny and Zoe are the 1176th and 1177th winners of the Points of Light award, which has been developed in partnership with the hugely successful Points of Light programme in the USA.
Zoe said: "It is a huge surprise and incredible honour to be recognised by the Prime Minister. There are so many amazing volunteers, so we are truly overwhelmed and humbled that the work we do through 'Alfie Bear's Journey Fund' has been honoured with a Points of Light award.
"Our precious little boy Alfie, passed away in 2014 from a DIPG, brain tumour and despite his devastating diagnosis he always found a reason to smile. Inspired by our Alfie, we are passionate about helping make a difference to future children and their families affected by DIPG.
"We hope that this award will help shine a spotlight on DIPG and raise some much needed awareness. We are proud to except this award on behalf of Alfie's older brothers, and everyone that has supported 'Alfie Bear's Journey' over the last five years. We dedicate it to our Alfie Bear and all children and families affected by DIPG."
Over 6,000 Points of Light have been awarded in the USA, and former Presidents have publicly supported the partnership with Points of Light UK.
There is a similar cross-party approach to the UK programme and MPs from different parties often present their constituents with their Points of Light awards.
Danny added: "To be recognised by the Prime Minister with the Points of Light award is a huge honour. Being told there was no cure for our five year-old son following his DIPG diagnosis was completely heart-breaking.
"Alfie taught us so much in his young life, and through our volunteer work, I feel that we are teaching people about him. We hope that this will help raise much needed awareness for the DIPG Community and all the incredible children affected.
"I also hope that it will inspire others to volunteer and help make a difference in their communities. Sharing this award in memory of our little boy is an extra special moment."