Christmas 2020 and New Year 2021 Newsletter
Christmas 2020 and New Year 2021 newsletter
For those of us living with kidney illness, or have a family member with such, we are usually very used to sudden nasty surprises occurring and affecting life significantly. However, none of us was fully prepared for the surprise Covid-19 has become in 2020 and the havoc wreaked on our global community in so many ways. One would need to be made of stone to not feel moved to tears seeing the sadness so many have endured. And yet even in this continuing nightmare, we see the best in humanity at times. We have witnessed the bravery and selfless giving of front-line workers, the positive affect sharing and working together on good science can achieve especially when resources are available. Also, heartening are the small daily acts of care and kindness by people and even business. Covid-19 will have a lasting effect on us for certain and the way ‘life’ is lived changed in some radical ways we can be sure of for keeps.
As I write with the great Christian festival of Christmas just a few days away with its core message of hope and love, and a New Year in 2021 following shortly behind, offering new possibilities – it may be hard to embrace these opportunities and the Spirit of Christmas. Indeed, many important spiritual and secular events have been cancelled, or drastically changed due to the virus including for many our Christmas day gatherings with our families which is heartbreakingly sad!
However, Christmas is a time of hope and as I write there is hope in the rolling out of Covid-19 vaccines in the UK and around the world – but it will take time, hence life will not be back to normal any time soon. I’ll keep you all informed on the vaccination information for the NS community as soon as I hear from nephrologists.
So, it has been a tough and worrying year for us all. However, there is good news as well. Little did I know 20 years ago that my life and our family life would change so drastically when my son David was diagnosed with FSGS out of the blue. We rejoice as David’s kidney anniversary is now 15 years and we have been astounded that his blood results they are the best ever! (Long may it continue!) 2020 also saw NeST celebrate its fifteenth birthday. Not perhaps in ways we would normally expect, but despite lockdowns and Covid-19 restrictions, many in the NeST community and their friends have managed to have, fun, raise awareness, and raise funds for research. Gemma our trustee kindly arranged some bingo nights earlier in lockdown which many loved. Thankyou Gemma! I’m so grateful for everyone who got involved in the celebrations and of course helped us regain lost revenue from cancelled events earlier in year. NeST Trustees and I have been amazed although funds are down from last year that you as a community and your loved ones have raised just over £70,000!! This helps keep hope alive.
Reflecting on how NeST has grown over fifteen years is amazing. From a desperate parent who felt there was little support around for families, NeST was born in Bristol to become a BIG, SMALL CHARITY – with a disproportionate punch looking at its size! It is humbling for me to work with so many people in NeST as we seek to support each other, find new therapies, raise awareness of NS and raise vital funds to help keep research continuing. In the fifteen years I have seen some very happy and positive areas of growth and yet I must be honest and say that have been times where tears flow, and sadness felt. Thinking of the loss of our dear Richard this year and two years ago beautiful young Charlie. Anyway, all of you who are part of the NeST family can feel very proud in how with willing partners Nephrotic Syndrome (NS) research is really on the map.
Like for so many, Covid-19 has rather changed the landscape of what was planned for NeST with many events postponed. Some of these events were around the launch of the new NS software app. After our excellent Bristol roadshow at the research laboratories which took place on World Kidney day, we’ve been unable to continue with our app roadshows. The Roadshows and app rollout will continue we hope later this year when it is safe to do so across the UK. You can download the Nephrotic Syndrome app module from the Patientview platform https://www.patientview.org/?fbclid=IwAR3cBhJVHBFYSfmFKwEqryQDXNQ4uQzyL8rVeDP7UkgqcAcyRnJFzuzvbXk#/.
However, Maryam who works very hard at the Bristol laboratories, came up with the great idea of how to keep connected to you all by organising some Zoom events. Great idea from Maryam! Our patient information event over the summer via zoom was well attended and the clinician’s advice regarding COVID-19 -19 was very reassuring too. We are planning further zoom conference calls one regarding the NS app early in the new year and on World Kidney day 2021 on international nephrotic syndrome research. We’ve 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. Please keep an eye on the Facebook group and on our website.
There has been some very exciting research news from the Bristol research laboratories these past few months much of which I’ve already shared with you all already. Professor Moin Saleem tells me he will kindly will give us all further updated newsletter in the next few weeks which you will be able to find on the newsletter section of the website. I will also notify you on our Facebook page too. Recently Dr Carl May a research associate from research laboratories interviewed Professor Moin Saleem and myself, sharing their latest exciting venture of creating of a new company known as ‘Pure Spring Therapeutics' which will become one of the first kidney gene therapy companies’. This is a massive initiative that will look to new therapies and a cure for those who have genetic forms of NS.
The podcast also sees me share a little of my story with our son David and some other insights like the value of researchers meeting patients and vice versa - giving a ‘real life’ setting with real people. Moin reminds us of the great importance of NeST raising funds and that to reassure you that the non-genetic nephrotic syndrome research will, of course, will continue as well and hopefully with your help we can help clinch some more amazing investment from pharmaceutical companies to invest in their world leading research on this type of NS as well! So please have a listen.
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 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 will go on for some weeks and months to come. What is evidently clear is all these people desperately wanting 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 do my best to support on behalf of those with Nephrotic Syndrome.
So, it’s been a year like no other and the future is as always, not known. However, it is so pleasing to see the NeST family share, support, fundraise and reach out to one another. It’s heartening to see good positive research take place even in the hardest of times.
So, going back that that little word ‘hope’ that we all need, there is much to feel encouraged by and that offers us hope!
Thank you again for your AMAZING support!
Please do remember to check the website and Facebook,
Meanwhile, I wish you all a Very Happy Christmas and a happy and healthy 2021
Much Love to you all! Wendy