About Nick
I’m Nick. I’m the father of two boys with AKU, the first metabolic disease ever identified. Because of AKU, their bodies generate a substance known as homogentisic acid at 2,000 times the normal rate, leading to joint deterioration and severe disability as life progresses.
More than 100 years since AKU was discovered, there still is no cure.
That’s why I’ve stepped down from my paid job as founding CEO of SolarAid, one of the fastest growing international NGOs in the UK, to focus as a volunteer on funding a cure to AKU. We’ve built an international network of scientists and patients to spearhead the quest for a cure, spanning the UK, Italy, France, the USA and many other countries. My vision is to scale up this research rapidly and find the funding needed so that we can find a cure within five years.
We’re learning fast about how to build a global rare disease patient movement. That’s why I’ve set up this blog to share everything that we learn with the wider rare disease community. We’re going to make lots of mistakes along the journey, but also, I hope, achieve significant success in ways that we can’t even start to imagine.
It’s only by working together as a rare disease movement that we will find cures for the thousands of rare diseases affecting millions of people around the world. So get reading and commenting and take action now for rare diseases.
And remember to donate to the cause by going to: http://www.justgiving.com/alkaptonuria
Cheers,
Nick
Dear Nic,
Remember our lunch with Catriona Maclay several summers ago?
Rob Pleticha described the Eurodis Communities Project to me this morning. When I asked him about using social networking to reach out to widen our community especially of donors, he spoke glowingly of your blog. I can see why and I will try to emulate it for the neuroacanthocytosis community. I have subscribed to learn from your blog. Can you give me any tips on getting started?
Glenn
Hi Glenn. Yes, I definitely remember our lunch! It was great to meet you there. I still have your book on my shelf and used it as an inspiration for developing the programme of our AKU conferences. The best thing for your blog is to post on it everything you learn that you’d like to share with the wider rare disease community. I try and post something every day of the working week. I got my inspiration for this blog from a blog on publishing by an incredible author called Joe Konrath. He set up a blog called the Newbie’s Guide to Publishing: http://jakonrath.blogspot.com/. I love the way he has a blog that shares all his knowledge with other aspiring authors, and hence thought why not do the same thing for AKU and rare diseases.