I found out about Findacure (now Beacon) by chance back in 2014. There was going to be a workshop on Fundraising while I was in London, so I called Flóra to ask if I could come even though it was last moment. I didn’t realise that was one of the first workshops to be held.
Pitt Hopkins UK was a support group at the time but a long way from becoming a charity. I think that was the first time I met others in the rare community.
Since that first meeting I’ve been to many workshops, talks, projects, study days, conferences, mentorship evenings, online RareChats and Patient Engagement Committees to name a few. I’ve had many wonderful mentors, made lots of dear friends, we’ve shared meals, we’ve become a registered charity, we’ve raised money for a research project, we’ve worked on management guidelines, we’ve applied for Covid grants, we’ve started a newsletter and we’ve developed a booklet.
Best of all we are part of a caring rare community that we can all call on for help and advice. We are working on renewing our website and on enrolling some more trustees.
Beacon is a great name! Beacon has been there every step of the way! There has been advice about how to become a charity, how to fundraise, how to work with researchers. They think of everything! They listen to our needs. They realise that many of us do not possess the skills that established charities have access to. They go ahead of us and aim to help us obtain the skills we need.
Beacon truly is a shining light helping lead the way for the rare community to follow when they need direction. A Beacon can also act as a radar and help us as individual groups know we are on the right course and Beacon does this too! With all the opportunities to meet other groups and charities we are all able to help each other.
I cannot imagine how far Pitt Hopkins UK would be on this journey without Beacon!
Chair, Pitt Hopkins UK