The power of hope and community action: FOP family and friends conference – 19 May 2018

After the disappointment of looking through ~13000 crystal drop images over the past couple of weeks and finding pretty much nothing in most of them and nothing that actually diffracted nicely in the rest, it was incredibly heartwarming and hugely inspiring to attend the FOP family and friends conference in Manchester last weekend. FOP Friends is a charity started by Chris and Helen Bedford-Gay, whose son was diagnosed with Fibrodysplasia ossificans progressiva in 2009 (see my first post for more on the link between FOP and DIPG). The charity helps support FOP patients in the UK, as well as funding research (such as ours) into finding a cure for FOP. Given the rarity of the disease (~800 patients known over the world), this is really important, as for most pharma companies, pouring billions of pounds into research for such a small consumer base is not particularly profitable, and ultimately their main aim is profit. Chris and Helen, with help from family and friends, organise this bi-annual conference where clinicians, researchers, patients and their families and friends can meet and engage with other in a way that I have not experienced before at other conferences.

We had talks from clinicians telling us about some of the other related problems that FOP patients suffer from, such as hearing loss due to the joints between the bones of the inner ear fusing. We heard from two pharma companies actually, who are carrying out Phase II clinical trials on potential FOP medicines. One is Regeneron, working on a monoclonal antibody against Activin A, and the other is Clementia, working on palovarotene, an ALK2 inhibitor.

We also had a talk from 19-year-old Chloe and her aid dog Ted, who was the highlight of the day for many. Chloe does not have FOP, but is wheelchair-bound as a result postural orthostatic tachycardia syndrome, a heart condition, and Ehlers Danlos, and she had come to raise awareness about Dog Aid UK, an organisation that will help you train up your own dog to become your aid dog. She showed us videos of Ted helping her undress, putting all the clothes in the wash basket, going to the kitchen to get a bottle of water out of the cupboard, and not only that, but going back after delivering it to close the cupboard door!! You can see more of Chloe’s story here. To be honest, her talk brought me to tears. She was so poised, so heartfelt, and clearly had an amazing connection with her dog. I think this is something many people don’t always understand about people with aid dogs – the dogs give them independence and confidence, and frequently, a reason to live after having lost so much.

This was a very special conference. It was emotionally intense, intellectually stimulating and overall incredibly moving. We met a number of patients (children, youngsters and adults) and their families, heard their stories, learnt about their struggles. It was heartbreaking to see the cutest, cutest little kids being slowly imprisoned in their own skeletons, and yet running/wheeling about and playing and laughing to the best of their ability, and older people already in various stages of mobility singing their hearts out at our impromptu karaoke evening. This gave me hope that there could still be time for these kids – they are so brave. Having been given one of the bitterest fruits of the genetic tree, patients and their families and friends are banding together to fight the disease with whatever they can, and giving each other support and a space to share and learn while they are about it.

I was moved, touched, inspired and motivated by the people I met at this conference. I felt I had to rush back to the lab and work harder and faster to find something, anything that will help FOP patients. Suddenly, everything feels a lot more personal now.

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