Tag: Networking

From Tweetup to Meetup Rhys and Deb, 2019 It had been over three years since I'd first met my friend Deb, who also has superficial siderosis. We met on Twitter in 2018 when we were both tweeting about superficial siderosis. Deb, her mum, and stepdad came to visit in May 2019, and we'd been hoping to meet up again at some point; but due to me having more brain surgery, my mum having foot surgery, and then the COVID pandemic, it wasn't to be anytime soon. Fast forward to November 2022, and Cambridge RAREFest22 was right on Deb's doorstep, so it was a great opportunity to (finally) meet up again. I booked tickets online for me, Deb, my mum Sue, and Deb's mum, Brenda. There was a sense of realism that it was actually going to happen this time. My mum and I booked the nearest hotel to Cambridge Guildhall, where RAREFest22 was being held, as it's always difficult to judge how far you can walk with a rare illness that severely affects mobility. Deb messaged me to say she and her mum had also booked the same hotel for the same two nights. Accessibility Issues My mum and I had been on the road for three hours travelling up to Cambridge from South Wales, and with about an hour or so left driving, I received a text from Deb saying that the lift (elevator) wasn't working and had been out of order for over a month! Considering we both have mobility issues and had booked 'Accessible' rooms, the fact that they didn't tell us was also out of order! Deb really struggled to get up the stairs to the first floor. Not a good start to what was meant to be an enjoyable weekend. Whilst I am okay going upstairs, I was anxious about going back down due to the clonus in my lower limbs, which makes my legs severely shake. Brenda, Deb, Rhys, and Sue outside Cambridge Guildhall RAREFest22 Once we had managed to get safely down the stairs with the help of the staff, we made the short journey over to the Guildhall where RAREFest22 was taking place. After signing in, we went into the first room, which was hosted by the 'Same but Different (SBD)', with their 'Days of Rare' and 'Rarity Life' exhibitions. A series of patient portraits symbolising various rare diseases, with explanations underneath. It was a lovely display of photography and visual storytelling! At the latter end of 2021, my mum and I travelled up to North Wales so I could take part in 'Rarity Life', so it was great to meet Ceri again (SBD founder and photographer) and see the fantastic work she's doing to raise awareness of rare diseases through photography. I've always found it interesting to read about the different rare diseases, as there are so many, but only a few people suffer from each individual one. Same but Different - Rarity Life and Days of Rare Displays Rhys with his portrait display, which highlights the hearing loss in superficial siderosis The Main Room Just before we entered the main room, I handed Deb and Brenda a stack of SSRA leaflets to give out to whoever they may meet while they were walking around. The main room had stands from various charities and institutions laid out in a circular format, many of which I'd previously met at the Beacon 'Drug Repurposing Conference' in London. Deb and Brenda stopped to chat with Medics 4 Rare Diseases, and my mum and I carried on wandering around. Deborah the Zebra and Brenda talking to Medics 4 Rare Diseases Cambridge Institute for Medical Research really caught my eye, and I ended up chatting with Joe, one of the doctors involved in their research. Thankfully, Joe was easy to lipread, so I didn't have to rely on my speech-to-text app, which was very temperamental due to all the background noise. Joe explained that they were researching how to get drugs through certain tissues, and with deferiprone having to cross the blood-brain barrier to remove the iron in superficial siderosis, it was of high relevance. It's encouraging to know that this sort of research is taking place, as it'll help many different diseases, both common and rare. Another stand that caught my eye was Sensmart; they had smell tests on display and were showing their research on anosmia(loss or change in smell), a symptom of superficial siderosis. While going around, I bumped into a few familiar faces, Catriona and Madhu from Life Arc. There was so much information to take in from all the various stands. Finishing Up We'd spent just over two hours visiting each of the displays and finally sat down for a coffee in the first room where the Same but Different exhibition was situated. I glanced over and saw Phillipa from Beacon and Kym from Rare Minds, who had been hosting a webinar series I was attending. I popped over to say 'hi', then went back into the main room one last time to say hi to Rick from Beacon before we all left for food.To finish the day off, we went to a Thai Restaurant, which was delicious. Sadly, when we arrived back at the hotel, we found the escalator was now out of order as well as the lift. Overall, it was a great weekend, other than the lift and escalator issues at the hotel!