What I am writing today is nothing short of a dream and the culmination of over five years of hard work.
When I started advocating back in 2019, when the arrival of my son collided with the sudden loss of my mobility due to a treatment change that didn't consider my personal circumstances or priorities, I didn't know the power of my voice or story.
For many months, I fractured, and pieces of me spiralled the depths of a well of depression and low mood as I struggled to adapt to being a disabled dad. The guilt of creating life and not being able to be the parent I envisaged I would be consumed my every waking moment. Lack of sleep, the feeling of burden and the increasing levels of pain meant, for a while there, I was numb, broken and standing on the edge.
Then, one day, I started to write, and as my words found others in similar dark places, a purpose and sense of hope brought a flicker of light back into my world. As my son grew alongside my number of published words, my confidence grew with it - both in sharing my lived experiences and as a dad. Before I knew it, I had gone from feeling like I was completely failing everyone around me to being on a one-person mission to make people like my son have a better tomorrow. I finally felt like a role model.
I call myself an accidental advocate. I never planned to speak in front of people, be asked to attend UK Government disability roundtables, travel, or take up podcasting and such. If you had asked the rugby-playing version of me back in 2018 if I would ever be willing, let alone capable of doing any of these things, I would have thought there was more chance of me becoming an astronaut. And I'm scared of heights!
A cause makes us capable of the most extraordinary things, but even then, there is only so far we can go alone. So as I sit here, in August 2024, a few days after my 40th birthday, I share news of my proudest achievement second only to becoming a father - that my advocacy journey, by means I don't fully understand, now finds me as the Founder and Chair of Psoriatic Disease UK, a creative and ambitious new patient-led charity for everyone impacted by psoriatic disease in England and Wales.
After over a year of planning and months of hard work, today, an email from the Charity Commission for England and Wales read:
Dear Applicant, You have applied to register the above organisation as a charity. We are satisfied that PSORIATIC DISEASE UK is a charity and it has been entered onto the Register of Charities with the Registered Charity Number 1209730.
Of course, this is just the beginning, and the real work starts now. Work that aims to improve the lives of those impacted by psoriatic disease and the burden it brings through community, peer support, and collaboration—not just those living with the diagnosis, but also caregivers and everyone around them.
I want to thank our wonderfully committed Trustees who have joined me on this exciting new journey for their support and the remarkable faith they have placed in me. I would also like to thank them for sticking with me, as I appreciate that few can keep pace with my passion, energy, and number of ideas (many wild!) for this work. They are a remarkable group of human beings, and I will have the pleasure of introducing you all over the coming weeks.
Please bear with us as we get our house and foundations in order. There is much to do—for example, on the website, to build our peer support spaces, write policies, set up banking, launch our social media, and so on —before we can really deliver on our promise.
If you would like to help us get the ball rolling and help people living with psoriatic disease, we are looking for volunteers with the following tasks and skillsets:
Policy writing (privacy, risk, terms and conditions, etc.)
Public Relations/Comms skills to help us write a press release about our launch
Legal advice and support
Bid writing and funding advice
Group and Forum moderators
Social media and marketing expertise
Please get in touch if you can help (or assist with something not listed here).
In the meantime, remember to sign up on our website, join the mailing list and follow us on social media to be the first to hear about how this modern and exciting charity grows from here!
Joel Nelson Founder and Chair
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