Hello everyone and welcome to our autumn newsletter. We have some fantastic stories from fundraisers over the summer and our CFUK T shirts have certainly covered some miles. All we can say is ‘Wow’ and thank you so much for all you do to help raise funds and awareness.
We’re also pleased to be developing links with other charities who are working towards the same goals and we’re sharing some of the ways they can help provide resources and support.
We’re delighted to be able to share Morven Hutchison’s unique animation about cystinosis and hope it may prompt others to have a go.
We’d love you to be able to join us for our Cystinosis Connect online meeting on Thursday 23rd October. It’s your chance to meet up with other individuals and families.
And finally, although it’s probably too soon to mention Christmas, there’s an offer from Margaret Newman for you to order some rather special Christmas cards that not only raise funds for CFUK but also raise awareness too.
We hope you enjoy the newsletter.
– Will Newman, Chair of the Trustees
Some astonishing efforts by members of our cystinosis community – and their local communities – to raise funds for CFUK.
Matthew’s fundraiser for Cystinosis Foundation UK
Just Giving link https://www.justgiving.com/page/matthew-skidmore-1
Matthew got in touch earlier this year asking how he could help CFUK and he set off to book himself on a 5K run
My name is Matthew Skidmore, 36 from Suffolk UK. I’ve had Cystinosis all my life and, although the struggles are real with my eyes, limbs as well as having had two kidney transplants life is really good. I decided to raise money for the Cystinosis UK charity by doing a 5km run. Although this seems simple to others, I struggle more than others to do this challenge due to some of the symptoms of this condition and wanted to make CYSTINOSIS more aware to others. I’ve raised over £500 so far and aiming to do other charity runs and other events in the near future to help raise even more money.
It was a fantastic event and gave me great pride and honour to represent the foundation in my first ever charity run. I hope to raise even more in the future and can’t thank the support and donations from friends, work colleagues and family. I would also like to mention my friends Daisy Fish and Jason King for doing the event with me. I would have really struggled without them.
5K for Ed and Ted
16th August Haigh Hall Park Run, Wigan
Just Giving link https://www.justgiving.com/crowdfunding/jamie-mclaren
Following the successful 10 for Ted & Ed last summer where a team of cyclists undertook a 130mile bike ride covering 10 local football clubs, to raise money and awareness for two special boys, Teddy Walsh and Eddie Pearson, for GRIN2D and Cystinosis. The Ted & Ed team were back for 2025!
Two families have been brought together through the shared experience of living with two rare diseases. Family and friends rallied to come together and do a 5K for Ted & Ed – involving all ages and abilities including Sam doing it in full flippers!
The fundraiser was in memory of Teddy Walsh who sadly passed away at the age of 17 months, and to further support Eddie Pearson through the Cystinosis research for his future life.
50 people were involved on the day raising a grand total of £2940 to be divided between Cystinosis UK and the Daisy Garland charity. Special thanks to Jamie and Donna McLaren for organising the day!
Scaling New Heights – Kilimanjoro for Kobe
Just Giving link https://www.justgiving.com/page/honeychurch.
Receiving a rare disease diagnosis for your baby is truly heartbreaking. When Luke & I found out about Kobe’s condition, it felt like our whole world had been turned upside down. We were overwhelmed with fear and helplessness, not knowing what the future would hold. It was also such a lot for Kobe’s big brother, Ellis, to carry at six years old. He had been so excited, eagerly awaiting the arrival of his baby brother. But the reality of having a sibling with a complex medical condition was incredibly difficult for him to understand and cope with at such a young age.
That’s why, when Rory and Brandon told us they were going to climb Mount Kilimanjaro to raise funds for Cystinosis Foundation UK in honour of Kobe, we were deeply moved, we were full of admiration for them. It meant so much to know they were willing to take on such an immense challenge to support Kobe, and every family affected by cystinosis.
When we first started our “Kilimanjaro for Kobe” fundraising campaign, we had no idea how big it would all become. We set an initial goal of £5,000, totally unsure of what to expect, especially as we hadn’t even planned our fundraising events yet. We could never have imagined the overwhelming support we would receive. As donations and prizes began to build, we increased the target bit by bit, eventually setting it at £20,000! Thanks to the efforts and generosity of so many, we’ve now raised an astounding £33,498 for Cystinosis Foundation UK. Every single penny of that will go towards supporting those affected by this rare disease—including our amazing little Kobe.
Just as importantly, we’ve helped raise awareness of cystinosis – not only within our local community but also more widely through local radio stations and social media news pages. We’ve been truly touched by how far Kobe’s story has reached.
A huge and heartfelt thank you goes to Rory and Brandon, who took on the ultimate challenge and successfully reached the summit of Mount Kilimanjaro! Their determination, strength, and heart have truly amazed us all. The climb was far from easy. During the final push to the summit, Rory began suffering from altitude sickness and came close to being stopped from continuing. But Brandon stepped in to pick him up, encourage him, and help him keep going. Without Brandon’s support, Rory may not have made it to the top, which would have been devastating after coming so far. What an incredible friend, and an inspiring act of strength and support when it was needed most. We honestly can’t thank them enough —not just for Kobe, but for every family affected by cystinosis.
As a family, we knew we had to give this campaign our all, especially with Rory and Brandon taking on such a huge challenge. With the support of Kobe’s Nannie’s, aunties, and uncles, we poured everything we had into the fundraising—and the response has been truly overwhelming. We organised two main fundraising events, including a bingo night that raised an amazing £4,457; a luxury raffle that brought in £6,500; our live music evening, complete with hog roast and ticket sales, added another £1,794 to the total, and a live auction alone raised an incredible £7,675.
We were blown away by the support from local businesses—with around 140 prizes donated, which we used across our bingo night, raffle, and auction. The generosity was overwhelming and played a huge role in the success of our events and the overall fundraising total.
Even more heartwarming was the way our local community rallied around us. People began organising their own fundraisers to support the cause; a bake sale at Ellis’ school, a local hair salon raffle, a charity book stall at our local bank, music events, a charity rugby match, a beneficiary of a charity auction, and collection pots in local shops & pubs.
The generosity we’ve experienced throughout this campaign has been truly humbling. Every message of support we’ve received, every ticket bought, every pound donated—it’s all helped to make a real difference. It just shows how much can be achieved when a local community comes together. We want to say a huge thank you – from our whole family, and our little warrior Kobe. We are so grateful to everyone who’s supported us. Whether you donated, shared our story, came to an event, or simply sent words of encouragement – thank you.
Hayley, Luke, Ellis & Kobe 💚
KIDNEY CARE UK
We’ve recently had a meeting with Kidney Care UK to see how we can best work together. Kidney Care UK is the UK’s leading kidney patient support charity and have been supporting kidney patients for 50 years. Their direct patient services are free of charge and provide support to thousands of patients and their families every year. As an added bonus, one of our newset trustees, Avril Biss, works for Kidney Care UK. As well as online resources and free booklets that can be posted to your home they offer:
- a support line
- financial support through grants
- counselling and emotional support
- benefits, welfare and money advice
- healthy diet support
visit https://kidneycareuk.org/get-support/ and/or watch their video by clicking the image below
“The support from Kidney Care UK and the Patient Support & Advocacy service, as well as your magazines, recipes and website, is brilliant and has kept me sane during a really hard time adjusting to life with kidney failure.”
….and you can help too
Kidney Care UK have sections on specific rare conditions, like cystinosis. We know cystinosis is more than a kidney condition, so have a look at their section on cystinosis here and see if you think there are ways in which it could be improved. We would welcome any comments that we could pass on to Kidney Care UK.
KIDNEY RESEARCH UK
We’ve been working with Kidney Research UK to help us with applications to get Procysbi a routinely prescribed choice for patients in the UK. They were partners in the survey we launched at the conference last year about the impact of different formulations of cysteamine. Because the NHS is organised regionally this approval process has to be done country by country and our Scottish trustee, Alex Hutchison has spent hours preparing the presentation to the Patient and Clinicians Engagement meeting. We now have fingers crossed that the submission will be approved this time.
As part of the partnership work Kidney Research UK have published an article about Alex and Morven (who has cystinosis) highlighting the impact that cystinosis can have. You can read the article by clicking the image below
Teenager has no choice but to wake up at 2am every day to combat rare disease
Chronic Kidney Disease Summit in Edinburgh One of our trustees, Alex Hutchison, was delighted to be able to attend the Chronic Kidney Disease Summit in Edinburgh in mid September. This event was hosted by Kidney Research UK – a charity that we have been working closely with on a number of initiatives. The evening started with an introduction from Sandra Currie – CEO of Kidney Research UK – who set the scene by making sure the audience were aware of the ‘Chronic Kidney Disease: An Action Plan for Scotland’ that was released last year.  Sandra’s messaging was clear – it’s only a successful Action Plan, if action is taken – applying some gentle pressure to the politicians in the room. It was humbling to hear the lived experience from two people, with regards to the impact that CKD has had on their lives. Alex was struck by how much of the emotive language that they were using would be repeated if she were to tell her own story as a parent of a teenager with cystinosis. Sentiments like ‘feeling lucky’ and ‘guilty about costs to the NHS’ really resonated. Three clinicians made presentations about how, frankly, easy it would be to take action, per the Action Plan. They all made compelling cases to prioritise CKD and get investment that would ultimately save long term costs. Finally there was a cross party panel discussion between MSP from the four main political parties and the Cabinet Secretary for Health & Social Care. It was clear that they were all moved by what they’d heard across the evening, but whether that is reflected in their manifestos in May is something to watch out for. From a Cystinosis Foundation UK point of view, it was great to see what the power of advocacy, community and shared goals can achieve. |
Cystinosis Animation
We are delighted to share with you a short animation that one of our teenage patients in Scotland has put together. Morven Hutchison wanted to create a visual explainer about Cystinosis which other teens could share with their peers. Please feel free to share this as you see fit. At just under one minute long, it’s a delightful watch.
| CYSTINOSIS CONNECT ‘Cystinosis Connect’ Thursday 23rd October 7.30pm We hope you will be able to join us for our next online ‘Cystinosis Connect’ – your chance to virtually meet other patients and families. Grab a drink and have a chat! The meeting focus will be on treatment and you can book your free place by registering here. BOOKING IS OPEN! CNE INTERNATIONAL CONFERENCE 2026 BOOKING IS ALSO OPEN for the CNE INTERNATIONAL CONFERENCE 2026 This is a FAMILY CONFERENCE running from Thursday 2nd to Saturday 4th July 2026   Hosted by Cystinosis Ireland the conference will be held in the fabulous Royal Marine Hotel, Dun Laoghaire on the outskirts of Dublin Visit the conference website to find out more and how to register and book your accommodation https://www.cystinosis-europe.eu/our-conference Hope to see you there! CARDS FOR CYSTINOSIS  You may have seen Margaret’s magnificent display of upcycled cards at the conference last year. These cards sell all year round raising funds for CFUK thanks to the generous support of local businesses and organisations, but Margaret wondered if any cystinosis families would like to buy a special pack of Christmas cards to help raise awareness and support the charity. All cards have a sticker on the back stating ‘sold in aid of Cystinosis Foundation UK’. As they are upcycled, all cards have individual designs, but packs can be ordered according to theme. You can choose from wildlife, farm animals, cats and dogs, religious, robins, ‘just nice cards’ or a miscellaneous mixed pack. Cards will be posted out (UK only) by mid November as follows: Pack of 10 – £10 (including £2.20 postage) Pack of 20 – £17.50 (including £2.50 postage) Every penny (including postage) goes to CFUK. To order, or for more information, email Margaret at margsn@gmail.com  HOW YOU CAN HELP CFUK  Easy Fundraising Over 4,000 shops and sites will donate, so you can raise FREE donations for us no matter what you’re buying. These donations really help us out, so please sign up if you haven’t yet. It’s easy and FREE! Find out more  Regular Giving We rely on your support, big or small, your help goes a long way. Setting up a regular donation is a great way to help us support patients and raise important awareness. Find out how If you know of someone who might like to receive this newsletter please forward it to them and encourage them to sign up. Together we are stronger. |