Rainbow Foundation invests in Big Freeze for a Brighter Future Media Release 26 August 2015 A foundation set up in memory of an infant who battled a rare form of kidney disease has funded equipment that will help doctors provide more effective treatment of children born with the condition. The Arran Brown Rainbow Foundation has donated £15,000 to the PKD Charity for the purchase of an ultra-low temperature freezer which will help to establish an expanded bank of samples to support research into Autosomal Recessive Polycystic Kidney Disease (ARPKD). Arran, from Cumbernauld, was born in 2010 with the severe kidney disease that expert consultants believe to be the cause of a number of miscarriages. For those babies born with the disease, it is thought that around 40% fail to survive the first two weeks of life. At a birth weight of 5lbs 2ozs, Arran had a very severe case of the condition and his cyst-filled kidneys were estimated to be making up around 2lbs of his weight. Yet Arran defied all the odds, celebrating his 1st birthday and dedication ceremony with family and friends, and inspiring those who knew and cared for him throughout his life. After his passing at the age of 14 months, Arran’s parents Alasdair Brown and Laura McNair established the Foundation to raise awareness of ARPKD and to fund research into the condition. The charity also looks to support families of children born with the disease and assist organisations who cared for Arran. With the support of friends and family members who became trustees and office bearers for the Foundation, they held their first fundraiser, a race night attended by over 100 people. Since then, the Foundation has hosted a number of activities in the family home towns of Cumbernauld and Dunfermline. Volunteers have also embarked on a range of challenges in support of the Foundation, which to date has raised over £66,000. Alasdair said the Foundation’s Trustees had spent a considerable amount of time looking for a project that would provide sustainable support for research into the disease. Whilst there are some blood and urine samples currently being housed for research, there is no dedicated infrastructure in place
for ARPKD research. Yet these samples could give greater insight into the condition which affects about 1 in 20,000 children born in the UK. Blood samples can be used for isolation of DNA and genetic mutation analysis while urine samples can be used for protein profiling to assess disease progression, severity and response to treatments. Under the scheme, samples from ARPKD patients whose parents have given informed consent at renal centres around the UK will be collected at each clinic visit, processed, frozen and stored appropriately in the PKD Biobank housed at the Royal Free Hospital in London. This permanent, archived collection of samples from all participating ARPKD patients will be available for all physicians and scientists to use in their research and inform future treatments. Alasdair said “The support our family received during Arran's life was overwhelming, as is the kindness and generosity of people since the Foundation was established. We've looked to fund projects and activities that acknowledge and say thank you for that support. Arran has inspired so many people to do amazing things and he has created his own legacy. However, we hope the funding of this equipment will help advance knowledge, understanding and treatment of this relatively unknown disease to the benefit of other children and their families. Tess Harris, from the PKD Charity, which supports families affected by ARPKD around the UK, said: “The Arran Brown Rainbow Foundation has worked closely with the PKD Charity in recent years, in particular by giving grants to enable parents and children to travel to the Charity’s information and support days. The Foundation’s latest donation towards much-needed research will bring hope and inspiration to other families like Arran’s who are coping with loss or the impaired quality of life caused by ARPKD.” Professor Patricia Wilson, from the Royal Free Hospital said: “The generous donation of a dedicated ultra-low research freezer to store ARPKD patient blood, urine, DNA, RNA and protein samples will bring together, for the first time in the UK, a unique collection to stimulate, facilitate and expand ARPKD research. This is the first and most important step to develop a nationwide resource for topflight innovative research into mechanisms and potential new therapies to combat this devastating rare disease. I cannot think of a more fitting legacy for Arran, by his family, supporters and the Foundation”. As well as supporting this initiative, the Foundation is working on its plan of activities for the next 12 months including the popular Big Quiz, which brings together friends and family for a fun evening at East End Park in Dunfermline and the continued sponsorship of Cumbernauld Colts disability team, which provides training and opportunities for local children to play football regularly. The annual Andrew Carnegie Highland Dancing Competition in Dunfermline organised by Arran’s Gran Allana and her dancing school will also be raising funds for the Foundation over the course of the event.
For more information on the Foundation or details of this donation, please contact Steven Birrell, Trustee, steven.birrell@me.com www.facebook.com/ArranBrownRainbowFoundation