Newsletters
NeST Summer Newsletter
Summer news.
It’s always a delight to see the many and varied fundraising activities our community organises. From sponsored walks and bake sales to creative challenges, each event does more than raise vital funds—it sparks conversations about nephrotic syndrome, brings people together, and reminds us that doing something positive can lift spirits and build resilience. We know that for some, health or life challenges make participation difficult at times. To everyone who has given their time, energy, or support in any way, thankyou. Your efforts amplify our message and prove that kidneys deserve just as much attention as any other medical condition.
Looking Ahead
As 2025 progresses, I’m heartened by the pace of nephrotic syndrome research and by NeST’s growing profile. We continue to expand our support services to meet rising demand for practical and emotional help at short notice. If ever you need guidance, and I don’t have the answer, I will always seek out the person who does if possible...
Please read on for inspiring stories of creativity and courage in our community. Whether you’re planning an event, sharing your journey, or simply spreading the word, your contribution makes all the difference. Please do read the relevant policies such safeguarding on the main NeST website when running any events.
With every blessing, Wendy
Our First NeST National Information Day in Scotland.
On 16 May we held our inaugural NeST information Day north of the border, choosing Stirling for its accessibility from across Scotland—and the glorious summer sunshine was a bonus. After a hectic week of last-minute adjustments, it was wonderful to welcome everyone and clinicians from the Glasgow Renal unit to a day filled with learning and community spirit. This means we have now visited all parts that make up our United Kingdom.
Speakers and Workshops
Professor Moin Saleem and Professor Gavin Welsh (University of Bristol) shared the latest research breakthroughs in nephrotic syndrome.
- A specialist renal nutritionist guided us through diet strategies to support kidney health.
- A renal psychologist explored coping techniques for living with chronic illness.
- Dr Ben Reynolds, one of our guest nephrologists, spoke on ‘An Idiots guide to Immune Drugs’
- Wendy closed the day with an overview of emerging support services and a Q & A session.
A Warm Highland Welcome
Our venue team at the ‘Stirling Conference Centre’ went above and beyond—accommodating last-minute catering numbers, and ensuring everyone felt welcome, all at a very reasonable cost. The informal networking over coffee and lunch sparked many meaningful conversations, and it was clear that many patients in Scotland often feel isolated. This event helped bridge that gap and foster stronger connections across our community.
NeST’s 20th Birthday Celebration Day at Bristol
The 30th of July was an exciting day as we celebrated the 20th anniversary of NeST held at the Bristol research laboratories. It was an information day, but the format was a little different as we paid tribute to the hard work of all those members both adults and children, trustees and admins who have worked extremely hard to the build the charity as well as celebrating the research successes of the research team. We celebrated everyone’s contributions in many different ways! The NeST family has done so much in 20 years, it’s amazing! Founder David Yearsley and Wendy Cook CEO, told the story of how NeST developed and has grown. Professor Moin Saleem gave a talk on RADAR the renal registries (for rare renal diseases) and how this has developed. My son David was one the first patients to be enrolled in RADAR and Nephrotic Syndrome was the first rare disease to be placed on RADAR. Professor Gavin Welsh gave a talk on laboratory research over the last twenty years. A video recording was played by Dr Louise Oni (Liverpool Alder hay) who sadly was not able to be present in person. Louise spoke about the life ARC centre (that is the bringing together of all the care management and research within the UK). Dr Ania Koziell (London, Evelina) spoke about current treatments and future treatments in the pipeline. The final talk was given by Dr Samantha Hayward who works at Southmead Hospital who cares for adults with Nephrotic Syndrome. After an enjoyable lunch, small groups enjoyed tours of the research laboratories that were both beneficial to those on the tour and the researchers. Children were encouraged to look down a microscope to see kidney cells and more. The children enjoyed having a tote bag on arrival with activity books and a special surprise of a Jellycat lion on this celebration day. Wendy gave a tribute slide show in recognition of the NeST’s family's hard work in fundraising and supporting the community. Wendy thanked Professor Moin Saleem, Professor Gavin Welsh, Dr. Wen Ding and the research team for their huge research efforts over the years. The day ended with an ENORMOUS beautiful birthday cake and we wished NeST a happy birthday. Wendy was thanked for all her hard work and was given an amazingly huge bunch of beautiful flowers! Wendy also praised David Yearsley for having the vision to set up the charity in the first place to support the research work being led by Professor Moin Saleem.
Many thanks again to all those who attended and gave up time for this special day.
Student Megan Hawkes a few months ago kindly agreed to be part of a patient panel to share her experience with living with Nephrotic Syndrome as part of a Eurodis https://www.eurordis.org/ multistakeholder meeting on Paediatric Chronic Kidney Disease which took place in Heidelberg.EURORDIS – Rare Diseases Europe is a non-governmental, patient-driven alliance that represents over 1,000 rare disease organizations from 74 countries. Its mission is to improve the lives of people living with rare diseases by advocating for better research, healthcare policies, and access to treatments. EURORDIS also coordinates Rare Disease Day, held annually to raise global awareness, and supports the development of national alliances and European federations focused on rare conditions.
It’s a powerful voice for the estimated 30 million people in Europe affected by rare diseases.
Megan enjoyed the meeting and said “interesting to hear all that is happening behind the scenes and how dedicated these professionals are to improving treatments for patients” Megan’s mum Claire who is also a very active member of NeST accompanied her daughter Megan. Claire shared that they had a “fabulous day with a lovely dinner at the end! Great people, great city and exciting things happening for kidney patients”.
We’ve seen a flurry of amazing fundraising events happening over the Spring and the summer which is extremely heartening to help boost further funds for NeST!! Please excuse me if I don’t mention them all here, but they range from Marathon events; Hugo’s exceptional card selling at different venues in Nottingham and London, namely at the Tower of London where Hugo gets repeated invitations to visit; parachute jumpers and wingwalkers; a three day mini music festival in Southampton and Jackie, Dave Megan's Mega raffle and Bake sale and Ann Kane (Lady Captain) 'Chesfield Downs Graveley Herts Golf team' incredible fundraising events!!
Paul Bishop organised another fabulous event with nine other brave wingwalkers to raise a magnificent sum of over 11 K for Nephrotic Syndrome Research!! Wow!! A great achievement!!!! All of us at NeST and the Research team are extremely grateful to them all for bravely and kindly taking part in this incredible challenge of wingwalking to raise vital funds for Nephrotic Syndrome research!!! I was so pleased to see such beautiful weather for the event too!!
'Chesfield Downs Graveley Herts Golf team' smashed their charity target with their sponsored parachute jump on Saturday the 12th July! Congratulations were sent from ALL of us at NeST & the Research Team on completing their parachute jumps!! Great achievement! They were an amazingly brave team, completing their jumps even though the plane needed urgent repairs suddenly between flights, making their event even more inspiring! An amazing sum of £7,227 was raised!! Wow!!! We’re incredibly grateful to the team and incredibly touched by their members, family and friends' incredible generosity! So grateful to the Lady Captain Ann Kane & her committee for organising this event. I’ve been told more events to follow by this wonderful team too!
We had two wonderful fundraisers Gemma Howes and Philip Lindon take on the London Marathon challenge and raise the amazing sum of 4K between them!! Congratulations again on your amazing achievement!!!
Sorcha Whelan and friends, Emma, Mark, Evie, Mollie, & All Staff and Rachel & All the Wonderful 15 musicians and all the customers who attended the ‘Clockwork Summer of 75 Weekender for NeST’ (a mini music fest) raised the AMAZING sum of £2,133.18!!! WOW!!! This is a phenomenal amount raised!!!! I'm completely blown away by everyone's generosity and hard work!!! It was really kind of landlords Emma and Mark!! It's really touching Emma dedicated the whole three days to fundraising for NeST to celebrate her 50th birthday.
Jackie Dave & Megan Bloomer kindly held a Mega Raffle and a Bake sale. Amazing prizes donated!! So grateful for their hard work!!An amazing sum of £1,500 was raised!!! Wow!!!
The fundraising hasn't stopped yet as we look forward to seeing many of our members take part in ‘The Great North Run’ next month ... .so look out for their fundraising updates and photos on our busy closed Facebook page which has now hit 3K in membership. If you’re not familiar with our group, we’re very friendly with many individuals on the page living with Nephrotic Syndrome, both adults and parents of young children. Please feel welcome to join us! To find us on Facebook please visit NeST (Nephrotic Syndrome Trust) https://www.facebook.com/groups/360915980608