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:
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.
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.
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.