On Friday, 8th May, Beacon for Rare Diseases was honoured to have two of its team members – Mary Rose and Blayne – nominated to attend the Royal Garden Party at Buckingham Palace on invitation from HM Lord-Lieutenant of Cambridgeshire, in recognition of their contributions to public service through the charity’s work for the rare disease community.
We are delighted that our work has been recognised by the Royal Family in this way. Not only is this an honour for Mary Rose and Blayne, but it also signifies just how important the work of Beacon is for the rare disease community.
Our services unite patient groups, researchers, healthcare professionals and industry; creating opportunities to collaborate, share knowledge and advance the field of rare diseases. Through these efforts, we are breaking isolation, building confidence and transforming the rare disease community into a stronger, more empowered and collaborative force.
On Friday, William and Kate, the Prince and Princess of Wales, were the Royal representatives and hosts of this Royal Garden Party. We were honoured to have been invited alongside many other inspiring individuals to meet them.
Blayne and Mary Rose, accompanied by Sam and Gemma (Blayne’s husband and Mary Rose’s mum), enjoyed a tour of the Royal Gardens on the day, described as ‘a walled oasis in the middle of London’!
They came across a stunning rose garden, a lake, an arboretum (a specialised botanical garden dedicated to the cultivation, study, and conservation of various species of trees and woody plants) and so much more.
The atmosphere was jubilant, with a military band playing songs including ABBA’s Dancing Queen and tunes from The Lion King. William and Kate greeted the attendees before Mary Rose and Blayne headed to the Tea Tent, where afternoon tea was enjoyed by all.
Here’s what Mary Rose and Blayne had to say about the special day:
When I first opened the invitation to attend the Royal Garden Party, I honestly almost dismissed it as a joke. And, truthfully, even after realising it was real, I still couldn’t quite believe it!
Working at Beacon for the last (almost) 10 years has been an incredible experience – one that I’ve genuinely loved and that has opened up my world to so many people and opportunities. Along the way, I’ve met extraordinary individuals who work tirelessly to improve the lives of people living with rare diseases, and it’s that shared drive and determination that keeps us all going, even when things can feel especially challenging.
Whilst it’s safe to say nobody works in charity for the perks, I’d be lying if I said it wasn’t an enormous honour to have both my work, and Beacon’s work, recognised in this way. It was also incredibly special to be able to share this once-in-a-lifetime experience with my mum, too! I certainly won’t forget it.
How do you find the words to adequately express how much this honour has meant to me and my family (on both sides of the pond!)
If you told my younger self that I’d walk the halls of Westminster and now Buckingham Palace’s Royal Gardens, I’d never have believed you!
Being a part of Beacon for nearly six years has been such a pleasure and true blessing. I’m so thankful that I can continue to meet remarkable people and leaders from across the rare disease space who inspire and excite me.
Being nominated to attend on behalf of the charity with Mary Rose meant more to me than I have the words for, and it further propelled me to ensure that no one faces their rare journey alone.
Thank you to everyone who has championed Beacon and me. This is a moment I won’t forget!
Almost 446 million people are living with a rare disease globally, and too many of them are facing that journey alone. Every contribution to Beacon’s work — however big or small — helps change that.
Behind every donation, every training attended and every partnership formed is a patient group that is stronger, more skilled and more confident, and a rare disease community that is better connected, better supported and better heard.
The rare disease community and patient groups need you.
Get involved today to ensure no one faces their rare journey alone!
