Christmas 2021 and New Year 2022 Newsletter




Christmas 2021 and New Year 2022 Newsletter

Dear Friends of NeST,

Christmas and New Year are fast approaching, I don’t know about you, but I feel 2021 has sped by!

This year has been a truly difficult one living with Covid restricting each of our lives in so many ways and I hope very much you and your loved ones have not been greatly affected, either by being physically ill with Covid, or you’ve sadly lost family members, or friends, or living with long term effects of the virus. My sincere condolences, love and prayers to you if you are one of those persons who have had to bear pain, sadness and heartbreak due to Covid.  I had optimistically thought we were near the end of it, but no, it seems we are facing another Covid wave in the coming weeks with the new variant Omicron, despite this, there is still much to celebrate, regarding the research at the Bristol laboratories and the fundraising which has taken place over the past year.

Firstly, I would like to share with you all the supercalifragilistic sum of funds which have been raised from your very generous donations and fundraising events this year, plus £15,000 in grants – so in total over £115,000!!!! THANKYOU SO MUCH EVERYONE!! You’re all amazing and so supportive to the Research team and they are completely bowled over like myself at your extraordinary selfless giving and all the kind donations received through your fundraising events.

Thankyou to all those who have found very creative ways of fundraising such as bravely shaving their heads for donations and taking to the streets and at home individually challenging oneself virtually on exercise bikes, skipping, skiing, walking, running and cycling after large race and other fundraising events had to be cancelled. Paul Bishop organised the March Marathon which was a huge success which raised £13,500!!! Paul plans to do an encore next year by inviting you all again to challenge yourselves to do another March Marathon and we hope to keep this as an annual event. So, look out for Paul’s Facebook post.

Paul if you remember has challenged himself to raise £50,000 for NeST to celebrate his 50th birthday next year and has a number of events planned for 2023 and 2024. Some of his friends will be joining him and have dared him to do certain challenges too -nice friends! These challenges include planning to undertake wing walking, three-legged race (Guinness book of records challenge) football matches for over 30’s at Crystal Palace Football Club, some brave men to take part in the 2023 calendar (wink, wink more details to follow on that one...!!!). For some of these events Paul is looking for more volunteers, please ask Paul, or myself if you wish to know more.

Last month, Dave Yearsley and I had a zoom call meeting with Community Support Group Champions to discuss putting together a calendar of events for 2022 and other suggestions to help support the NS community. I would like to confirm Julie Robinson will be organising the Duck Race next May, I’m sure you will agree with me it was great fun last year! Samantha Fenn will be organising a NeST calendar highlighting our fundraising events and possibly involving the children in designing Christmas cards to sell come next September.

We also discussed having a NeST get together somewhere central such as the Midlands area, either late spring/early summer in 2022. One, or two people have come up with suggestions and I’m in process of making enquiries. Of course, I do realise this is all dependent on the Covid situation, but I am looking ideally for a location that can offer both indoor and outdoor space for our meeting. Any further suggestions please do contact me.

Whilst having our discussions it was suggested by one of our support group champions 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. So far it has been decided we shall try and have regular zoom meetings to just simply have time to chat and share experiences of coping with NS, which will be organised by Racheal Ravenhill and myself. Also, 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. The first two sessions will take place on the 15th and 22nd of January. 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.

The development of the stand-alone app which you will be able to download from the Google and Apple stores is progressing very well indeed. The app developers who are based in Liverpool together with the Renal Registry and myself consulted NeST members recently on the demo app. I’m pleased to say everyone gave it a BIG thumbs up and approved the design so far, but also gave great feedback on further fields and tweaks that could be made. Thoroughly constructive meeting and the app developer remarked how intelligent our team of NeST members are! Of course, I know that, I felt so proud!!

We’ve also received an amazingly generous donation of £10,000 from UCB (is a multinational biopharmaceutical company headquartered in Brussels, Belgium towards the development of the app. We are hoping very much in a month, or two the app will be ready to share with you all virtually on zoom. I’ll organise a date in the next few weeks and advertise the zoom link to you all on the NeST website and on Facebook. As to further NeST app roadshows, it’s difficult to plan anything on a large scale due to the Covid situation, but if it improves then possibly, we may have smaller meetups within our support groups regionally. I will keep you posted on social media.

Building on our successful zoom events the previous year we had a very well attended zoom meeting on World Kidney Day 2021 on international nephrotic syndrome research. We invited not only clinicians and researchers here in the UK to share their latest research, but researchers and clinicians from India, Sri Lanka, South Africa and Australia too. Maryam Afzal researcher at Bristol kindly once again helped organise speakers and hosted the meeting which I’m incredibly grateful to.

There has been more very exciting research news from the Bristol research laboratories, supported by funding from NeST. Professor Saleem’s group has recently reported exciting new research, supported by funding from NEST, on ‘GlomSpheres’; a new method for modelling Nephrotic Syndrome in the laboratory and for testing potential new drugs. Current models are too simplistic and thus are not ideal for understanding the complex biology of the kidney. GlomSpheres are formed by growing human kidney cells in microscopic 3D spheres using magnets. Growing cells in this way allow them to mature far beyond the ‘simplistic’ alternatives, whilst still being easy to produce at scale.  The result is a model of the kidney glomerulus that more accurately represents that found in the human body.  

Excitingly, Professor Saleem’s team has demonstrated that they are able to induce ‘diseased’ states to GlomSpheres with the addition of known disease-causing agents, as well as plasma from patients with Nephrotic Syndrome. They said “We can also prevent the formation of these diseased states with the addition of known anti-fibrotic agents. GlomSpheres, therefore, represent a new advanced, scalable method for the testing of medicines and thus represent a useful novel tool in the fight to develop new effective drugs for Nephrotic Syndrome".

To view the whole article, it can be found on our latest news section if click on this link  https://nstrust.co.uk/news/179/24/Exciting-Research-advances

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!

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 2022!

Take the greatest of care! Much Love to you ALL! Wendy Cook  

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