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Lockdown of society at large has been a new and strange experience for everyone. While for many in the rare disease community remote working or even personal isolation aren’t entirely new experiences, the quiet streets, closure of schools and nurseries, and shortage of toilet roll has impacted us all.

With less social contact and less variety in our days, it is really important that we are keep an eye on our mental health and personal well-being. In this week’s blog we are taking a quick look at how the Findacure team have settled into life in isolation, and how they are keeping busy away from work.


Lockdown has been a strange and challenging experience for me, as my two-year old has gone from four days a week at nursery to full-time at home. My wife and I have found a unique pattern of work that lets me work full time for Findacure, while she works three days here week at her job. This has meant a big increase in Daddy Day-care!

Luckily, this is really fun. I have been able to see a lot more of my daughter and reignite my long-lost love of playdough! I’ve also begun to indoctrinate my daughter into the love of wildlife and rock music. We now watch about 20 minutes of David Attenborough together whenever I am in charge – it is going so well that she can now spontaneously identify a wildebeest!

I can also take her for (isolated) walks in the woods where she loves looking for birds, butterflies, and woodalums (her word for woodlice) – she even saw a muntjac deer with my wife yesterday. Finally, I am proud to report that she can now say “Rock and roll daddy!” on demand, and dances impressively well to Aerosmith feat Run DMC, Walk this way. Daddy Day-care for the win.

Outside of work and childcare time is pretty limited, but I’ve been enjoying the latest season of Better Call Saul on Netflix, and finding ways to board games online with my friends and brother online. Throw in a quest to re-read the entirety of Harry Potter (I believe Mary Rose has been stuck halfway book five for over two years now) and I’m managing to find plenty of nice moments in this strange new world. Now if only my hair clippers would arrive I could stop worrying that I look like a lego man…



Lockdown for me feels as if it is going both fast and slow at the same time, which I’m sure is similar for lots of others! I am currently living with my family, Theo the cat and Lola the dog and I’ve been here for about 7 weeks due to coming back here after a ski holiday in early March.

Lockdown has actually provided a great opportunity to bring out my creative side again as I love painting, drawing, and sewing. So far I have created a matching set out of an old skort, made cards for family members and friends and painted some white jeans cow print to match my countryside setting! Catch me rocking these trews when I am finally back in the Findacure office and I have already agreed to make some zebra ones for Laura (very fitting ey.) I should think my mum is frightened that I will soon start cutting up the curtains to make dresses!

I am also enjoying catching up with old school friends over Zoom, though I have to say I will gladly never attend a quiz again after this! It is great to see online communities thriving at the moment and I have also been attending online events and panels. My Netflix account has also seen a spring in activity and whilst I would like to say I am enriching myself with new shows and cultural documentaries I am actually mainly watching re-runs of friends!

We are lucky enough to live in a really lovely part of the country, so I have been really enjoying going on walks as the forget me nots, bluebells and wood anemones are in full bloom; and not to forget the very cute and springy lambs! 

Mary Rose       

Living in lockdown presents different challenges for different people. As I live on my own, my biggest concern going into this was how I would mentally cope with a lack of social contact for the foreseeable future. In normal circumstances, my daily dose of interaction comes from going to work every day and the initial thought of losing that was very hard to deal with.

Thankfully, and surprisingly, it hasn’t actually been too bad, and despite the fact that the last time I saw a fellow human in the flesh was well over a month ago, I haven’t yet gone full Tom Hanks in Castaway (Wilson!). Instead, I’ve actually found myself more in contact with friends and family than ever before. As our busy lives have all been put on hold, it’s been nice to reconnect and find new ways to hang out and share fun times with each other. It’s something I hope will continue when we enter whatever the next stage of “normal” life looks like.

Another positive has, of course, been the wonderful weather we’ve been having. I’m lucky in having a small garden to lounge around in and, given my love of being fully submerged in water, last year aquired a paddling pool – really, it’s just a giant inflatable bathtub! Much of my down time has been spent sunning myself in there with a good book, and is top of my agenda for the current weekend ahead! When not doing that, I’ve been attempting to get into some level of fitness on my newly purchased treadmill, it’s hard work I tell ya!

I also decided it would be a great time to tackle all those puzzles I’ve had lying around for ages (and buy a few more!). I thought I’d begin with an easy 750 piece “Dueling Wizards” scene from Harry Potter. More than week on, it’s safe to say it’s getting the better of me…

Of course, I do have to give a special shout out to my main man (cat) Jasper. His furry little face has certainly been an immense source of comfort over the past few weeks – as I’m sure is the same for many of us with pets – and I can’t even imagine what life would be like right now without him.


Lockdown life has certainly been an eye opener to how maybe slowing down can benefit everyone in my household. I live in Saffron Walden with my amazing partner and our 3 year old son, Ethan – who has embraced being at home with mum & dad everyday! I genuinely believe, that he thinks, we have given it all up to stay at home with him and play with dinosaurs – which makes him very happy!

I only work part-time and run my own business from home so it has all been less of an adjustment for me than others however I think my furloughed partner has had a much more dramatic change from being in full time work to being practically full time daddy day care.

The plus sides have definitely been discovering some of the beautiful walks that surround this beautiful place. We only moved here in November so this time has really allowed us to explore some of the lovely woods, fields and forests. Cooking has also been an exciting pass time for us, instead of rushing a meal at the end of the day, I’ve found the time to explore new recipes and even bake cakes with my boy. Doing meditations in morning has kept me grounded and allowed my mind to catch up with the ever changing ways our world is adapting. Being stuck in does mean that we have been occasionally creative about our entertainment from having a kids disco for Ethan to streaming some live DJ’s for ourselves to dance round the kitchen to. I did dream of reading books throughout this time however with a toddler, work and video calling some of my favourite family & friends – my only other pastime seems to be catching up on Netflix and trying to introduce my son to some nostalgia. We recently watched “Honey I shrunk the kids” & “Willow”, which immediately took me back to being a much younger me.

The Findacure team in lockdown

by Philippa Norman time to read: 7 min