Hello everyone and welcome to our Summer newsletter. Quite a bit of change with our trustees. We’re sad to say goodbye to one of longest serving trustees, Neil Sugden, who has been with us since 2011 and thank him for all the work he has put in for the charity, including helping to organise last year’s conference in Manchester. We wish Neil all the best for the future. We’re pleased to hear that Tom Kenning has finally been discharged from hospital. He is still continuing treatment at home on a long road to recovery, but this must be a relief to Tom and his family. We are also delighted to welcome 2 new trustees to join our team: Tom Kelly who has a daughter with cystinosis and Avril Biss, an adult with cystinosis. We’ll let them settle in before asking them to share their stories. We are also looking for some voluntary support in 2 specific areas – Social Media and Treasurer. If you, or someone you know, might be interested in joining our team, please, please get in touch.
In this edition we have an insight into what makes a scientist ‘tick’ as Professor Herbie Newell lets us into the back story of how he came into research in our Real People, Real Stories section. Also, as promised, the ‘behind the scenes’ story (and more) from Millie Clare following her Dragon’s Den experience.
We are excited to learn that the 2026 CNE International Conference will be hosted by our friends Cystinosis Ireland and hope that many of you will be able to meet up again in Dublin.
As always we are indebted to our fundraisers who go above and beyond to raise money for the charity so that we can continue to fund research and help improve the daily lives of those affected by cystinosis.
We hope you enjoy the newsletter.
Will Newman, Chair of the Trustees
NEWS
In the last newsletter we mentioned that our Chair, Will had been invited to talk to c200 yr 4 medical students at Cambridge School of Clinical Studies back in October 2024. As well as getting immediate feedback, Will was delighted and surprised to receive the following gift in May from one of the students who had heard his talk. Such a kind gift and positive response. Will will be returning to Cambridge in December to try to fix ‘cystinosis’ in the heads of a fresh batch of year 4 medical students.
Dear Ellie and Will
My name is Ellie. I’m a Year 4 medical student from Cambridge and I was in the audience when your grandad came to talk to us about you at our medical school. I was really moved by your story – cystinosis is a condition I’d never heard of until then, and now I think of your story often. This hat was inspired by one of your grandad’s awareness campaigns. I loved the idea of shaving a message onto your head. This way you can carry a whole slogan, and without a trip to the barbers. Really, anyone who can knit can make one (and maybe get the size more accurate). I hope you are all well and thank you so much for coming to talk to us at Cambridge. From Ellie (2?)
Living with Cystinosis and Pitching to the Dragons: What Really Happened
If you’d told 8-year-old me—the girl with the feeding tube, the one missing school for hospital appointments, the one with a rare condition no one had ever heard of—that one day she’d be standing in front of five of the UK’s most famous investors on national TV, I don’t think she would’ve believed you.
But that’s exactly what happened earlier this year when I appeared on Dragons’ Den.
I didn’t apply. I was actually scouted by the show after they found out about Human Beauty, my accessible beauty brand through an award I had won. I was so excited, it had been a dream of mine to be on the show and I was one step closer to achieving it. The process was weeks and weeks of intense due diligence, pitching and at every stage being told that this doesn’t guarantee you will be on TV (it’s only guaranteed when it airs!)
I was ready to show everyone that for every “no you can’t”, I was living proof that we can do whatever we put our minds to. Because when you grow up with Cystinosis, being underestimated often feels normal. We all know what it’s like—endless hospital stays, meds by the handful, missing out on things that other people just take for granted.
By the time I was 24, I’d already been through two kidney transplants, more operations than I can count, and yes—the classic moment of a doctor Googling my condition time and time again. It could’ve been easy to just focus on surviving. But I wanted more than that.
Makeup became my therapy. Not in a “look pretty” way—but as a way to express myself and to stand out, as people would stare anyway so I thought why try and ‘fit in’ when I was born to stand out. Human Beauty was born from that—beauty products designed to work for everyone, including those of us with limited dexterity, visual impairments, chronic pain, or sensory sensitivities.
Dragons’ Den wasn’t just about pitching a brand—it was about showing up as my whole self: a disabled founder, a woman, a person who refuses to shrink to make other people comfortable. I wore head-to-toe pink, a corset, platform trainers (all things I have been told aren’t ‘professional’ and I owned it!
What they didn’t show on TV was the real work: the grant funding I secured before filming, the £16,000 turnover I’ve made since, the community of over 10,000 people I’ve built who believe in this mission with me.
And the truth? It hasn’t all been glamorous. Behind the scenes, I’ve faced battles you don’t see on camera— ableism, false promises, burnout and yes I have lots of moments I want to give up. This isn’t just a business—it’s about representation. It’s about making sure that disabled people, especially those of us with rare conditions, get seen, heard, and respected in spaces we’ve always been shut out of. I didn’t go on Dragons’ Den for fame—I went on to change the narrative of who belongs in business.
So, if you’re reading this as someone with Cystinosis or a family member supporting a young person with a rare disease—this is for you too. You don’t have to follow anyone else’s path. We might take longer routes, need more rest breaks, and need to do things differently, but we still arrive at extraordinary places. I’m proud of how far I’ve come—and this is only the beginning. Even if it’s not with Human Beauty I know I will create impact and have a fulfilling life because its also important to remember success looks different for everyone! My ultimate dream a few years ago was to travel and it happened! After I was well enough I did 3 months solo travelling around Asia and it was the best thing I’ve ever done.
So, to all my amazing, vibrant & courageous Cystinosis community, be brave, be bold and never forget to be YOU! Because you are extraordinary.
Millie x
EWOPA
(European Working Group on Psychosocial Aspects of Children with Chronic Kidney Disease)
When I signed up for Ewopa 2025 I wasn’t quite sure what to expect. Sure, CFUK had sponsored a stall there and a number of the talks had ‘patient experience’ in them, but it was a medical conference. Also, not the catchiest of titles, the European Working Group On Psychosocial Aspects of Children with Chronic Kidney Disease. I guess EWOPACCKD was a step too far! Anyway I turned up on Friday at midday to set up the CFUK stall (people who attended the CNE Conference in Manchester last year may recognise the blue blanket), grabbed a cup of coffee and waited to see what would happen. I had been communicating by email with the organiser Dean Wallace who (in my head) I’d imagined to be a rather distinguished, greying individual so I was surprised when this cheery young man who had been setting out welcome biscuits and drinks introduced himself as Dean. This welcome set the tone for the conference and I didn’t feel sidelined as a ‘lay’ person. Conference was opened by a retired paediatric nephrologist, Robert Postlethwaite (he was grey and distinguished), but when he finished his opening talk on the history of paediatric renal services with tears in his eyes after remembering some key moments, I knew this wasn’t a dry conference. These people really cared.
I can’t possibly report back on all the talks (you can read the programme here) so I’ll report on what stays with me.
- Short videos of patients talking are incredibly powerful. In particular a 15 year old from Somerset talking through her kidney transplant experience and a young boy (c8) being interviewed while hooked up to dialysis, playing on his ipad and giving casual responses to questions such as: Does it hurt? (of course not) Would you tell other children that it’s ok to be on dialysis? (thumbs up) etc
- The presentations and discussions on low potassium diet for kidney patients were incredibly difficult to focus on, when my head was screaming ‘but it needs to be high for cystinosis children!’
- Information needs to be clear. The average reading age in UK is 9 -11. At CFUK we are looking at our website and printed info to try to make them much more accessible
- Arvind Nagra, my granddaughter’s first nephrologist, based in Southampton, is a real mover and shaker. She is the driving force behind the Ready Steady Go programme to empower children, young people and adults in managing their condition. I had never met her before but she altered her presentation at the last minute to include cystinosis hubs as a positive driver for information/education.
- A presentation from a German doctor about running a make-up session with young women with Bardet-Biedl (a condition with similar prevalence to cystinosis resulting in obesity and poor eyesight) prompted me to tell people about Millie and Human Beauty. I was surprised and delighted when Mille’s paediatric nurse from Bristol introduced herself to me over the coffee break.
- Discussions with Kidneys for Life, a North West based charity and the main sponsor for the conference were really useful We shared information and ideas like their Kidney Karnival (a fun day out for patients and families) that they piloted last year.
- And finally, the most humbling meeting of all, puts everything else into perspective. While setting up the stall I was approached by a nephrologist who said that she had 8 cystinosis patients in Malaysia. She had trained in Manchester and with the new-found knowledge this had helped identify these 8 children. They had no access to white blood cell cystine analysis so this wasn’t easy. However, she said, because of lack of funding she was only able to treat one of the children. I asked her how on earth she had made the decision which one to treat. She said “The first one diagnosed”.
So, it was a really valuable conference and I’m glad I could attend. Lots of contacts made. Our CFUK fridge magnet/bottle openers have been much admired (and I hope adorning the fridges of many kidney specialists) We’ll be discussing many of the ideas and issues raised in our trustee meetings. Still thinking about those Malaysian children and doctors, though.
Will Newman, Trustee
The National Registry of Rare Kidney Diseases (RaDaR) is a UK Kidney Association initiative designed to pull together information from patients with certain rare kidney diseases. With over 35,000 patients recruited from 109 sites across the UK, RaDaR is the largest rare kidney disease registry in the world.
One of our new trustees, Tom Kelly, was very grateful to attend the RaDaR 15 year celebration event in May. The overview of the work RaDaR has helped support over the last 15 years was very inspiring – both the direct research the charity has enabled, and the people it has brought together. The opportunity to create links with some of the larger charities, such as Kidney Care UK and Kidney Research UK was also extremely valuable, and we hope to build upon these links in the future. You can see the quarterly RaDaR Patient Newsletters here.
If you or your family member have cystinosis and haven’t joined RaDaR please do consider doing so. Check with your nephrologist to see if you are already registered or to request that your data is added to RaDaR. The more the cystinosis community is represented the better future research has the potential to be.
REAL PEOPLE, REAL STORIES
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Professor Herbie Newell
You are all probably very familiar with the name, Professor Herbie Newell, who, since Professor Roz Anderson’s tragic death in 2018, has taken on the challenge of driving the potentially life-changing pro-drug, CF10, towards clinical trials. Read below to find out more about the ‘man behind the myth’ as Herbie gives us a glimpse into his life before CF10.
 I was born in Purley, South London, in 1955; the youngest of three. I grew up in a safe and happy home, but in the shadow of World War II; my mother worked in the War Office, her first husband was killed whilst serving in RAF Bomber Command, and my father served in the London Fire Brigade. I left school at 16 and went to work as a trainee laboratory technician at the Marie Curie cancer research laboratories, and after attending day release and night school for 7 years I had the equivalent of A levels and a degree.In 1976, a young graduate came to work at the laboratory who has been my wonderful wife for 47 years! I moved to the Institute of Cancer Research and Royal Marsden Hospital where I did my PhD, again part time, and had my first experience of taking new drugs from the laboratory into the clinic. There were no research nurses then, and so the technician from the laboratory (me!) put on a clean lab coat and moved onto the hospital wards. During my PhD I worked on four new drugs the second of which was carboplatin. Carboplatin went on to be the drug which – to this day – is most frequently prescribed by the NHS to treat cancer being active against childhood cancers, ovarian cancer, lung cancers and many other tumour types. Working on new drugs at the laboratory-clinical interface taught me how important clinical research is not only for scientific progress, but also to offer patients and their families hope for a better future. I also learnt how wonderful patients are in bravely and altruistically volunteering to take part in experimental drug trials. I moved to Newcastle University in 1989 and with a very clever cancer doctor (Hilary Calvert), the medicinal chemist Roger Griffin and many talented Newcastle colleagues including Bernard Golding, we set up a new anticancer drug discovery initiative which has gone on to discovery 2 more new cancer drugs, one of which – rucaparib – has helped to revolutionise the treatment of women with familial breast and ovarian cancer. Overall, I have worked in teams that have developed 6 new cancer medicines that have gone on to be licensed drugs, and in 2018 I was made a C.B.E. by the late Queen Elizabeth II; a great honour that was largely a reflection of the excellent scientists and wonderful patients I have worked with in my career. I retired from cancer research and Newcastle University in 2016 and was advising the late Roz Anderson at Sunderland on her application to the Medical Research Council for funding for the pre-clinical development of the cysteamine prodrug CF10 for the treatment of cystinosis, when she became unwell. Tragically, Roz was diagnosed with an advanced uterine cancer and when it became clear that no further treatment was available, we agreed that I would take on the CF10 project after her death. The rest will be history.  |
FUNDRAISING
We never cease to be amazed by the lengths you will go to help raise money for the charity.
Rory & Brandon
Climbing Mt Kilimanjoro on 8th September
Just Giving link https://www.justgiving.com/page/honeychurch.
Astonishing efforts from the Honeychurch family in Devon and, at time of going to press, this fundraiser has brought in over £6000. Not sure the CFUK t-shirts will be the ideal clothing for the climb, where temperatures can reach well below -15°, but perhaps they could act as one of the layers? Certainly more appropriate than the shorts and crocs, though. Good luck with your training guys and keep us updated.
16th August Haigh Hall Park Run, Wigan
Just Giving link https://www.justgiving.com/crowdfunding/jamie-mclaren
We’re really grateful to Jamie who is organising a fundraiser for 2 charities in one go. One for Daisy Garland supporting children with epilepsy in memory of Teddy Walsh who sadly passed away aged 17 months. For CFUK, this is to support Eddie Pearson, aged 4, who has cystinosis. Eddie’s mum, Amy, has sent us this photo of one of her friends (with some enthusiastic supporters) who is going to attempt the run in flippers. Maybe they’re expecting rain on the day but this is sure to make a splash with the local press.
Matthew’s fundraiser for Cystinosis Foundation UK
Just Giving link https://www.justgiving.com/page/matthew-skidmore-1
Matthew Skidmore will be running a 5k at Barrow, Bury St Edmunds on 20th September 2025. Matthew has cystinosis and is training hard and hoping to “raise money to make people aware of this condition as it affects mine and other people’s lives.”
HOW YOU CAN HELP CFUK
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