Christmas 2022 and New Year 2023 Newsletter
Dear NeST Family,
Merry Christmas & a Very Happy New Year from ALL of the NeST Team & the Research Team!!!! I would like to say a HUGE THANKYOU for your AMAZING supercalifragilistic fundraising and hard work this past year -altogether you have raised a whopping £130,000 for Nephrotic Syndrome Research!!
I cannot believe another year has passed so quickly! I do hope you and all your loved ones are keeping well and looking forward to meeting up and enjoying all the Christmas and New Year festivities!
Thank you so much to everyone who has supported research studies and helped with the development of our app 'Nephrotic Syndrome UK'; it's being integrated currently with the renal registry and I hope it will be released on google and apple stores later next month. I will keep you posted with the date as soon as I know on our busy Facebook page https://www.facebook.com/groups/360915980608 and here on this website. If you would like more information regarding the app please click on this link - https://nstrust.co.uk/news-and-events/nephrotic-syndrome-app
Thank you so much to all those who have supported myself and represented NeST at conferences and kindly held mini roadshows to help promote the app. I really appreciate your fantastic support!!! Hopefully and as long as it covid safe and rail strikes cease we can resume our annual conference and roadshows very soon!!!
Thank you to all trustees, community support group leads, admins on this page, and other support groups admins and everyone who has kindly reached out and supported one another on this page it's super heartwarming to see & have your help and support!!!
David Yearsley and I plan to have a fundraising meeting at the end of January and I will be in touch with all community support group leads with a date and zoom link. Amazing events you held last year and I'm looking forward to hearing about new ideas for next year. If anyone is reading this has any ideas, or wishes to join our fundraising meeting please contact me wendy@nstrust.co.uk
Whilst having our discussions it was suggested by one of our support group champions last year that not just coping with NS, but the endless worry of the pandemic and its restrictions has left an indelible mark on each of our lives and some of course more than others and could NeST somehow give extra mental health support and resources. We all agreed as a group we ought to seek out ways in which we could develop more time and resources to help people gradually over the next coming weeks and months. Some meetings vai zoom have been very successful and I plan to organise further zoom calls soon. Dates to be confirmed in the next few weeks. The zoom calls will be a time to chat and share experiences of coping with NS.
Paul Bishop’s wife Dana is a qualified ‘Relax Kids Coach’ and in the New Year I am pleased to say will be offering NEST families some free Relaxation workshops that can help children and teenagers manage difficult emotions. Further details can be found on our latest news section and the poster on our Facebook page. We shall also try and develop further resources on our website too.
Professor Moin Saleem has kindly given us all further updated research summary which can be found beneath this newsletter. The new company known as ‘Pure Spring Therapeutics' (one of the first kidney gene therapy companies) headed by Professor Moin Saleem and Dr. Gavin Welsh is establishing itself very well and working at an enormous pace for patients! Remember this is a massive initiative that will look to finding new therapies and a cure for those who have genetic forms of NS.
Apart from my involvement in NeST I spend time with various study groups here in the UK, one such group is the NURTuRE enterprise here in the UK with ‘Kidney Research UK’, but partners with pharma in Germany and Switzerland too. The research is going incredibly well and researchers and I thankyou enormously to all those who have got involved. Your blood, urine and plasma samples are very valuable! We do still need more participants (the pandemic has slowed recruits down somewhat, but research remains active), so if you feel you would be happy to be involved, please speak to your consultant at your earliest opportunity I’d be most grateful indeed! For more information, please visit https://www.nurturebiobank.org/
Internationally I’ve been very honoured recently to be involved with a group of clinicians and researchers around the world determining guidelines for those who are steroid-sensitive. It’s very important work and discussions have continued all year and we are very close now to completing. I say once again what is evidently clear is all these people desperately want to do their best for their patients even if their country cannot access all the medicines on the market, or have little government funding, or resources to offer. I will endeavour to do my best to support this working group on behalf of those with Nephrotic Syndrome.
Our lives are so full of uncertainty, but one thing is for sure we can rely on one another for support, it’s so heart-warming our NeST family share, support, fundraise and reach out to one another. It’s also heartening to see good positive research stoically kept going even in these difficult times. Your part of this cog -please remember without your support, this wouldn’t happen!
Thank you again for your AMAZING support and hard work to NeST! I very much hope you and your loved ones are well and your Christmas will be a hospital-free one. If you are in hospital at the moment, I really do hope and pray you will be better soon to rejoin your family at home!
Thank you again for your Amazing support and I look forward to working with you all again next year as we fight to find new treatments for all types of Nephrotic Syndrome. Please note Professor Moin Saleem has promised me a research newsletter soon to share with you all.
Please do remember to check the website and Facebook regularly for updates!
I wish you all a Very Happy Christmas and a Happy and Healthy 2023!
Take the greatest of care! Much Love to you ALL! Wendy Cook