Niemann Pick Research Foundation

Niemann Pick Research Foundation The NPRF was a charity dedicated to promoting UK trials into promising therapies for NPC. It closed in April 2024 after 13 years.

11/04/2024

We are pleased to announce that Berna Seker Yilmaz, MD, Research Associate, Genetics and Genomics Medicine, University College London (UCL) has been awarded The William French Memorial Award!

The William French Memorial Award offers grants and bursaries to UK based young scientists and early career researchers working in the field of Niemann-Pick disease type C (NPC), with preference given to supporting their studies, and to research or activities that may lead to the advancement of progress in the study of NPC.

The Award was created as a lasting legacy by the Niemann Pick Research Foundation in memory of William, who was diagnosed with NPC at just 9 months old. William led a fulfilling life despite his diagnosis and passed away peacefully in August 2023, aged just 22.

You can learn more about The William French Memorial Award at the NPUK website, here: https://www.npuk.org/research/the-william-french-memorial-award/

Berna has been awarded the grant to attend and present the findings of the following study: “Understanding the Infantile Phenotypes of Niemann-Pick Disease Type C (NPC)” at the Society for the Study of Inborn Errors of Metabolism (SSIEM) 2024 Annual Symposium (3-6 September 2024) in Porto, Portugal. We thank her for her ongoing commitment to our community.

In April 2011 we set up the NPRF with a conservative 3 year plan. We wanted to raise money to fund small research proje...
06/04/2024

In April 2011 we set up the NPRF with a conservative 3 year plan. We wanted to raise money to fund small research projects that our NPC scientists were struggling to fund. Our first fundraiser saw a team cycle from Lands End to John O'Groats and thanks to the amazing support we received, we raised an incredible £180,000. The 3 year plan went out the window and over the next 10 years we raised a total of £875,675, supported 6 UK institutions, providing 27 grants. Covid provided a natural break and with William's needs increasing, we made the decision to close the charity. We had one last golf day in 2022 (held over from 2020) and then we started the process of closing the charity. Almost 13 years to the day after we started, the NPRF was officially closed last week.

Throughout our time, we have worked closely with the NPUK and were delighted that they agreed to take the remaining funds we had, a total of £53,552.55, to ring fence them for ongoing research for young NPC scientists in William's name. As you will know, sadly at the age of 22 we lost William in August last year and the fund was therefore set up as The William French Memorial Fund (https://www.npuk.org/research/the-william-french-memorial-award/). The NPUK Research Committee (which Sue is a member) has already agreed it's first award.

Anyone wishing to raise money in William's name can still do so, please contact the NPUK for details. William's cousin George is running a marathon next month in his memory, his other cousin Ellena is planning a 3 peaks challenge and a team (including David) is taking on an ultra marathon in June.

The NPRF website (www.nprf.org.uk) is still available for information and links.

All that is left to say again is such a massive thank you for all your support and generous donations over the years. We could not have don't it without you. As Helen Keller said "Alone we can do so little, Together we can do so much"

Thank you

The French Family

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44 Ledborough Lane
Beaconsfield
HP92DD

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