The Ness Fund

In August 2021, our beautiful baby Ness died at 38 weeks of pregnancy and was born a few days later. Her absence is felt so keenly in our lives and the lives of our wider family. We love her and miss her always. Her life was short, but she continues to touch the lives of many and in this way, we find ways to remember her.

We believe Ness would have been a force for good in the world and even though we would always have wished for her to be here above all, we feel honoured and inspired to commit to furthering her legacy through The Ness Fund.

Our aims are:

To increase research and understanding of stillbirth, so that fewer families face the heartbreak of saying goodbye to their baby;

To support education and awareness of baby loss so parents can make better and more informed decisions about when to seek help;

To support improved practical and emotional support to bereaved families;

To promote our environment and natural world, as this is where we find and love Ness now.

The only found cause for Ness's death was a placenta disorder known as Delayed Villous Maturation. There is emerging research in this field but there is a lot more to be understood before diagnosis in pregnancy and treatment would be possible. The Ness Fund wishes to support the amazing research being done in this area by the charity Tommy's. The Ness Fund is currently supporting a PhD student, Sharanam Soni, supervised by Professor Alex Heazell of the Tommy's Rainbow Clinic/University of Manchester. Sharanam and Professor Heazell have aspirations to transform the understanding of Delayed Villous Maturation across a three year project. The project aims to produce precise diagnostic criteria for DVM, identify which clinical characteristics are associated with significant DVM, and determine whether factors associated with DVM affect placental vascular development. This research study is now over eight months underway and is making good progress. We recently had the privilege of visiting The Manchester Rainbow Research Centre and heard about the preliminary findings of Sharanam’s extensive review of the research in this field to date, and the next steps of the project. It was wonderful to see how closely the research laboratories and clinical work is organised at the Manchester Rainbow Clinic.

***CHRISTMAS 2024***

The Ness Fund Christmas Appeal 2024

Spatial RNA Sequencing

As our supporters know The Ness Fund is currently funding a research PhD into Delayed Villous Maturation, the placenta disorder that was the most likely cause of Ness’s death. This year has been a special one with PhD student Sharanam Soni and supervisor Professor Alex Heazell working hard on the project. Sharanam’s review of the literature was published and there were many insights into how we can understand DVM better. The team have also written an information sheet on DVM published by Tommy’s.

Next year, there are big plans for the research. Prof Alex and Sharanam have told us that spatial RNA sequencing will be a technique used for the bulk of the work. It is a technique that shows exactly what individual cells are expressing and how they map to different pathways.

Sharanam has told us a bit more about this technique and its relevance to the research on Delayed Villous Maturation.

‘Spatial RNA sequencing is a cutting edge technology that helps to visualise exactly which cells in the placenta have altered RNA expression. This will give us access to a large amount of novel data about DVM placentas and how they vary from healthy placentas. Further analysis may also give us more information on factors that contribute to the development of DVM.’

The issue is this highly specialist technique is expensive, about £5000 for four samples.

This is groundbreaking research that you can help us fund. Every little helps. If you’d like to remember Ness and other precious babies with us this Christmas and contribute to further detail and maternal health research, please consider making a donation via the link in our bio. Thank you so much for following the research developments and supporting us.

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The Ness Fund has also supported smaller projects, including providing funds for Kicks Count Charity to have a stall at the Baby Show in London. As well as research, we believe in supporting essential information and education that allows parents to be fully informed and empowered to make choices about their baby’s care in utero.

Alongside our ongoing commitment to Tommy's and the research they are undertaking, we are looking for other projects to support our aims and to be the force for good in the world that Ness would have been had she lived.

Thank you so much for donating to The Ness Fund so we can continue to support projects such as these in the future.

The Ness Fund operates as a restricted charitable fund under the registered charity Princes Exchange Foundation. Your donation will solely go to The Ness Fund and not other funds under the Princes Exchange Foundation.