On 12th October, Faith, Sophie and Blayne attended RareSummit23 at the Wellcome Genome Campus in Cambridge.
In this week’s blog they share what they got up to at the event and their highlights of the day!
The team was proud to exhibit at the event and thrilled to see that so many of our friends and collaborators were doing the same.
We saw some old faces and met with new ones while attending moving presentations from a range of panels and speakers. It was wonderful to see so many attendees stopping by our booth to say hi and learn more about our work.
Business cards and leaflets were exchanged, and everyone went away with a smile and hope for the future.
It was a privilege being able to spend the day with those working to ensure that no one faces their rare journey alone.
Hear what Blayne, Faith and Sophie thought of the day:
“This was my first time attending RareSummit and what a fantastic experience it was!
I finally got to meet a fair few of those whom I’ve been working with in person after three years. I think I gave out just as many hugs as I did business cards! I love interacting with those whom we support and collaborate with so #RareSummit23 was a fantastic way to see old and new friends.
The panel sessions were incredible, but the one that brought me close to tears was the Rare Youth Voices & Choices panel. Chaired by the fantastic David Rose, this panel session heard from five young adults who are living with a rare condition. I was moved by Max Fisher, Ellie Cornwell and Maxwell McKnight’s stories and heart-wrenching experiences of growing up rare.
Max’s story especially stuck with me. Max shared that they are deafblind and faced blatant discrimination when seeking employment as a disabled scientist. It took them editing their CV to say “Sports coach” versus “Wheelchair Basketball Coach” to get interviews since employers made assumptions about their capability.
Hearing Max question why being a scientist and being disabled couldn’t coexist broke my heart. I was so grateful to hear Max and the panel’s story at #RareSummit23, as I firmly believe that rare youth need to be heard and acknowledged more. This won’t be a panel session that I soon forget.”
Blayne Baker, Digital Resources Manager
“I was given the opportunity to attend RARESummit on the 12th of October and exhibit all the wonderful work Beacon does, alongside Blayne and Sophie.
The day was a great success and we all said what an enjoyable event it was. The day was packed full of insightful and heart-warming talks from the rare community – all of which were engaging and informative.
It was lovely to meet so many new and friendly faces, as well as catching up with those we haven’t seen in a while.
As my first time attending RARESummit, I’m really looking forward to returning again – thank you Jo for such a well-put together conference!”
Faith Walpole, Fundraising Officer
“For me, the 12th of October was a day of firsts. Although I’m no longer the newest member of the Beacon team, I’m still only four months in so this was both my first conference and my first time exhibiting! I really enjoyed catching up with old friends, people I’d only come across on a screen, and so many new people too.
One of my highlights of the day, as I’m sure it was for many, was the Rare Youth talk. Being forced to confront the daily obstacles people in the rare disease community live with was both moving and shocking.
This was epitomised in the catch-22 discussed by two of the speakers of either appearing ‘too disabled’, and therefore being instantaneously and unfairly judged and discriminated against, or ‘not disabled enough’ and therefore disbelieved that they were struggling or even were disabled.
It seems that some people fail to grasp the duplicity that it is possible to struggle with daily pain and be simultaneously successful (in the traditional sense).
This kind of moving and empowering discussion peppered the day, both on stage and at our booth. Working in an umbrella organisation with a lot of our work online and in groups, I haven’t had much experience one-on-one and in-person with our supporters. Outreach to help even more people directly and (hopefully) with a long-lasting effect is one of the things I am truly motivated by, and I loved being able to chat with people who weren’t clear what Beacon does.
I won’t forget seeing the interest in people’s eyes as they realised that we might be able to help them. It felt like Blayne, Faith and I were living up to our charity’s name, a Beacon, proud of our role as a facilitator of training, support, and guidance to the space. I’m honoured and humbled to be part of the discussions and collaborations which will make a real difference to people’s lives.
We’re all doing great work in the rare disease space, with so many different ideas and initiatives being developed.
However, one thing RareSummit taught me was that we’ve still all got a long way to go. Our work isn’t done, and perhaps will never be. We’ve all got to keep collaborating, brainstorming, and innovating to improve the world, in our own small way, step-by-step and day-by-day.”
Sophie Ellis, Projects Officer
Thank you Blayne, Faith and Sophie for sharing your day with us at the RareSummit 2023!
