A Sussex family are to donate £20,000 to the University of Birmingham to fund research into a rare genetic condition (Von Hippell Lindau or VHL), which affects the blood vessels and causes tumours to develop in many areas of the body.

The Stillwell family from Worthing have become tireless fundraisers for research into VHL after Allen Stillwell and his three daughters Tantara (12), Ella (10) and six year old Freya were diagnosed with the condition.

 In 2003 the family set up a charitable foundation called ‘Tantara’s Wish’ to increase their fundraising efforts.

The family will present a cheque to Professor Eamonn Maher, who is leading research into the development and treatment of the condition.

There are currently more than 300 known cases of the syndrome in the UK.  Existing treatment for cases of VHL involves surgery to remove and treat the tumours. Allen has had operations on his brain, kidneys and eyes.  However, with early detection and treatment the prognosis is significantly improved.

Birmingham is the leading specialist centre researching the condition in the UK. Professor Maher’s team were involved in locating the gene responsible for Von Hippel Lindau fifteen years ago and have continued to research the disorder. 

Professor Maher comments: “We are absolutely delighted to receive such generous support from the Stillwell family. Patients with VHL can develop tumours in different areas of their body and so regular monitoring is required to detect tumours early.

At present, treatment is focused on detecting and removing tumours, but our aim is to develop treatments to prevent tumour formation and growth. Studying Von Hipell Lindau is also extremely useful in our wider understanding of a range of similar genetic conditions.

Tracey Stillwell comments: “Through Tantara’s Wish we aim to put the fun into fundraising and continue to support research into the condition I feel that we are helping in some small way towards a better future for our young VHL sufferers.

Allen's mother Margaret passed away from the condition when she was just 32 and I wanted to provide a way of helping ourselves by starting "Tantara’s Wish. We have managed to take offers of help from our friends and community and turn them into direct help for VHL sufferers.”


For more information please contact Ben Hill, Press Officer, University of Birmingham, telephone 0121 414 5134 or mobile 07789 921163

Notes to Editors


‘Tantara’s Wish’ has been successfully raising funds for research into VHL since 2003. Fundraising events have included Charity balls, Golf days as well as raising £5.000 through a local carnival.