It’s amazing what opportunities life can throw at you, especially when you have a rare disease.

A few months ago I was casually browsing though Facebook when I saw a post that caught my eye:

Canada West Acromegaly Post
This seemed like too good an opportunity to miss and, when I thought back to all the work I had done over the past year, I felt like I was in with a good chance.

Being an Advocate

Not to be confused with being an advocaat, I set about listing all the things I had done over the past twelve months – to help raise awareness of both Acromegaly and the even rarer Wyburn-Mason syndrome. I surprised myself at what I had done:

  • Presentation to Pfizer on Rare Disease Day
  • Featured in Acromegaly Awareness video for Novartis, to help train nurses around the world
  • Organised the first UK Acromegaly meetup, with over 40 attendees
  • Become a Volunteer Ambassador for The Pituitary Foundation, to attend events and help raise awareness
  • TV and Media interviews
  • Book talks (which always mentioned my conditions)
  • Lots of tweeting and posting

And, whilst it wasn’t covered in the past year, I mentioned that I was also talking at two Rare Disease conferences in Cambridge and Belgrade later this year.

I hit the send button. It would be three weeks till I found out.

Hello Canada!

So did I win? Well, I’m typing this in the departure lounge at Heathrow, so yes – I did! Deanna Baddiuk who is organising the conference excitedly called me on Skype one morning to tell me that the panel had reviewed all the entries and – due to my work over the past year – felt I was deserving of the Prince Award, in recognition of Tanya Angus who sadly died from Acromegaly aged 34.

So what had I won? Flights, hotel, a bit of spending money – and even a prize ceremony too! I immediately asked if I would be able to talk, and Deanna confessed that she hadn’t even considered this. I love sharing my story and Deanna was able to find me a slot to talk about this and what it means to be an advocate for Acromegaly.


Dan J at Heathrow

Waiting at Heathrow – and tyuping this blog post!


So the bags are all packed, the laptop well charged for the 10 hour flight (eep!) and I’ve even booked a Whale Watching excursion tomorrow. If I don’t come back tasting of maple syrup, something’s very wrong.