Renal Agenesis UK Volunteer Charity Trustees

Renal Agenesis UK is run by a small group of volunteers who have all been affected by the loss of a child after a diagnosis of Bilateral Renal Agenesis.

Gillian is the founder and chair of Renal Agenesis UK.

She and Lawrie lost their son, Jacob, following a diagnosis of Bilateral Renal Agenesis in Jan 2014.

After a lack of support in the first few months and there being little information available about the condition, Gillian wanted to have a place where parents could find information about the renal system and why it’s so important during pregnancy, but also offer a safe space for parents to connect with others who had experienced the same as them.

Terminating a much-loved and longed-for pregnancy for medical reasons is an experience no parent ever thinks they will have to go through and this adds another layer to the grief they are already experiencing from the loss of their beautiful child.

Gillian’s hope when setting up Renal Agenesis UK was to give parents a place where they can connect with others who know what they have been through and understand. Gillian is also a reflexologist and divides her time between reflexology and running Renal Agenesis UK.

Lawrie is a co-founder and charity trustee of Renal Agenesis UK.

He is married to Gillian (founder) and they lost their little boy Jacob in Jan 2014.

Lawrie is a co-founder of Renal Agenesis UK and feels there is a need for better-signposted aftercare support.

He is glad to be raising awareness of Bilateral Renal Agenesis because like many other families he had never heard of the condition before his son was diagnosed with it.

Jeanette is treasurer at Renal Agenesis UK.

Jeanette lost her great nephew after a diagnosis of bilateral renal agenesis.

She was delighted to take on the role of treasurer and hopes her experience and knowledge will help to guide and support Renal Agenesis UK as it continues to grow.

Rosie is a charity trustee at Renal Agenesis UK.

Rosie volunteered to help the charity in 2022 after the first TFMR Awareness Day.

Rosie lost her daughter, Arabella, to bilateral renal agenesis in July 2021. She was delighted to discover a charity specifically dedicated to this condition as she felt there was little support and information out there relating to her situation.

Rosie feels there is a need for more awareness around TFMR and is glad to be part of a charity that is dedicated to raising awareness and providing a safe and supportive space for families whose baby has had a diagnosis of bilateral renal agenesis.

Rosie is looking forward to working with the charity as it continues to grow.

Lucy is the trustee secretary at Renal Agenesis UK.

Lucy joined the Trustee board in 2022 after spotting the Charity’s involvement in TFMR Awareness Day.

Lucy lost her son, Benjamin, to bilateral renal agenesis in May 2021 after discovering he was poorly at her 20-week scan. She wanted to be part of a team where others would understand the continuing loss of Benji in her life.

She hopes to be able to help support other families who are affected by the diagnosis and improve the accessibility of information about the condition to those who need it.

Ness Gunn is a charity trustee at Renal Agenesis UK.

I lost Matthew to bilateral renal agenesis in May 2004.

I have recently celebrated his birthday by running 22 runs in 2022 for charity.

Back in 2004, there was limited support and knowledge, especially about TFMR and Renal Agenesis. Including being able to share experiences with others – within my town I was told I was only the second known case.

I have been looking for a charity dedicated to this and am happy to have found Renal Agenesis UK.  I was surprised by the rise in cases and believe it is important to raise awareness, support families affected and improve people’s understanding of TFMR.

Even more so to help make connections with parents and families – a sense of community around their loss which Renal Agenesis UK is doing.

If you would like more information or join Renal Agenesis UK board as a charity trustee please email info@renalagenesis.org.uk, you would be most welcome.