Newsletters
NeST Christmas Newsletter
A Christmas Message from NeST: Celebrating Achievements & Looking Ahead
From Windsor Castle to fundraising triumphs — thankyou for making 2025 unforgettable. Here’s to hope, research, and community in 2026…
As I grow older, I find myself reflecting on life’s sunshine and showers. Living with Nephrotic Syndrome (NS) can sometimes feel like weathering a hurricane, and those of us in the NeST family know this all too well. Yet, amidst the challenges, there are moments of joy and pride that remind us of the strength of our community.
One such high point for me this year was being awarded an MBE for services to people with Nephrotic Syndrome. On a beautiful sunny day, 30th September, I attended Windsor Castle with my family for the investiture. Walking the impressive Long Walk, entering the castle, and being greeted by Lifeguards, Gurkhas, Busbies, and a live quartet was unforgettable. The staff made everyone feel special, and in the historic Waterloo Room, I was humbled to receive my honour from Prince William, the Prince of Wales. This moment will remain one of the highlights of my life — and I accepted it not just for myself, but on behalf of the entire NeST family. Your dedication, fundraising, and involvement since our launch in 2005 have made this possible.
This year has been difficult for many, yet paradoxically, NS often leads us down unexpected paths that bring good and positive experiences we might never otherwise have known. That is part of the mysterious rhythm of life we share.
Celebrating 2025 Events
It has been a busy and inspiring year, here’s to name, but a few:
• The March Marathon
• Sorcha Whelan’s NeST Weekender
• National Information Day in Stirling, Scotland
• Our 20th Anniversary celebration at the research laboratories in Bristol
• Wingwalk fundraiser
• London Marathon; Great North Run & Great Scottish Run
• Bake sales, bowling club fundraisers, and Chesfield Golf Club’s phenomenal support
• Hugo-Rhy’s inspiring fundraising efforts -has just reached 12K Wow!!! Amazing!!!!
Each event has been a testament to the generosity and spirit of our community. You’ve all been so AMAZING!!! Thankyou so much to you all for your tireless help and support!!
Looking Ahead to 2026
Date for your diaries: our National Information Day will be held on Friday 13th March 2026 at the Michael Smith Building, University of Manchester Campus, Dover Street, Manchester M13 9NT. Registration runs from 10–10.30am, with the day concluding at 3.30pm. The event will welcome adults with NS, children, parents, and carers. An Eventbrite link will be shared early in the New Year.
Research Updates
Professor Moin Saleem has shared the latest research summary, available on our research pages and newsletter page. Excitingly, clinical trials are set to begin over the next two years — a milestone made possible by your fundraising and participation in studies. Thank you for helping us reach this stage!
Please continue to support us through donations or fundraising events. Even small monthly gifts make a big difference. For details, email me at [email protected].
Important Request from Dr. Martin Christian
Dr. Christian and colleagues are developing a platform trial for NS — a research protocol that evolves as new evidence emerges, ensuring patients receive the best treatments. To design this effectively, they need input from patients and parents.
• A Zoom meeting will be held on Tuesday 27 January at 7pm.
• Email me at [email protected] for the link if you’d like to join.
• Even if you cannot attend, please share your views via this survey.
Your input will help shape research priorities and encourage participation.
Wishing You Peace and Joy This Christmas
Together we’ve achieved so much in 2025 — from community events to groundbreaking research. Let’s make 2026 even brighter…
Christmas and New Year bring hope of peace and fresh beginnings. Whatever 2025 has brought, may 2026 and beyond be filled with good things. Together, we will continue our work to support those affected by NS and to seek new, more effective therapies.
Wishing you all a Very Happy Christmas and a Healthy, Joyful New Year.
Wendy