Contents n About the International Brain Tumour Alliance. . . . . . . . . . . . . . . . . . . . 6
WORLD EDITION 2016/2017
n Learning how to live by Nitesh Mohanty. . . 42
n Keepin’ on keepin’ on by Matthew Fullerton. . . . . . . . . . . . . . . . . . . 70
n Meet the IBTA Team. . . . . . . . . . . . . . . . . . . . . 7
n First SNOLA neuro-oncology conference by Dr Marcus V C Maldaun. . . . . . . . . . . . . . 44
n Immunotherapy for brain cancer by Dr David Reardon and Professor Michael Weller . . . . . 8
n Everything erased and under control By Damià Calvet. . . . . . . . . . . . . . . . . . . . . . . 46
n Extracts from the Report of the Second World .
n Cover Story - So much has been taken
n The science behind a therapeutic
Summit of Brain Tumour Patient Advocates by Dr Stuart Farrimond . . . . . . . . . . . . . . . . . 74
from me - but dance remains! by Anna Mott. . . . . . . . . . . . . . . . . . . . . . . . . 10
ketogenic diet for brain tumors by Dr Adrienne C Scheck and Eric C Woolf . . . 48
n The GBM AGILE Trial by Dr Anna D Barker. . 13
n Matthew’s Friends: supporting
n Petition leads to milestone
Westminster debate in the UK. . . . . . . . . . . 16
groundbreaking research into brain tumours and the ketogenic diet by Emma Williams. . . . . . . . . . . . . . . . . . . . . 50
n The comic book cure for cancer!
n Alicia Pueyo Fund:
by Adam Bessie. . . . . . . . . . . . . . . . . . . . . . . 18
moving towards a cure for DIPG by Gloria Garcia Castellvi. . . . . . . . . . . . . . . . 52
n Peace of mind: how an arts-based support group helped brain tumour patients reframe by Dr Catherine Dunlop. . . . . . . . . . . . . . . . 102
by Irene Azong-wara . . . . . . . . . . . . . . . . . . . 22
n Psychological support for brain tumour patients: the Croatian experience By Valerija Korent and Marta Dumanćič. . . . . . . . . . . . . . . . . . 54
n Measuring health-related quality of life in brain tumour patients: benefits and problems by Dr Linda Dirven . . . . . . . . . . . . . . . . . . . . 104
n An interview with David Arons, National Brain Tumor Society . . . . . . . . . . . . 28
n Cure Brain Cancer Foundation by Barrie Littlefield. . . . . . . . . . . . . . . . . . . . . . 56
n V Simposio Internacional de la Concientización en Tumores Cerebrales by Dr Gabriel Vargas. . . . . . . . . . . . . . . . . . . 106
n When a parent has a malignant brain tumor: .
n From cancer researcher to
an innovative weekend camp for families by Dr Mary Lovely and Dr Abigail Levinson Marks. . . . . . . . . . . . . . 30
brain cancer patient by Yaron Sidney Butterfield. . . . . . . . . . . . . . 58
n I know where the lightning strikes by Catherine Klopper. . . . . . . . . . . . . . . . . . . 20 n Brain tumours in Cameroon: a journey of hope.
n Introducing Gris Positivo in El Salvador by Gabriela de Hurtado. . . . . . . . . . . . . . . . . 72
n 50 Shades of Grey Matter by Melissa Lim . . . . . . . . . . . . . . . . . . . . . . . . 98 n A Kids’ Brain Tumor Cure Foundation by Amy J Weinstein . . . . . . . . . . . . . . . . . . . 100
n Elisa’s fight by Adéline Cendres. . . . . . . . . . 108 n Julián’s journey by Erika Mendoza. . . . . . . 110
n The “Walk for Love, Walk for Hope” n Making hope a reality - breaking the scientific ‘doom loop’ for pediatric brain tumors by Sarah Hamilton. . . . . . . . . . . . . . . . . . . . . 32 n Brain cancer got me thinking - an art show by the Canadian brain tumour community by Rosie Cashman. . . . . . . . . . . . . . . . . . . . . 34 n To trifinity and beyond! by Bonni Suckling. . . . 36
and “Happy Camp” by Ying-Hsiu Lin . . . . . . . . . . . . . . . . . . . . . . . 61
n Rebecca’s story by Jennifer Gouchie-Terris. . . . . . . . . . . . . . . 112
n A global web-based registry for
n ISNO 8th Annual Meeting by
rare pediatric brain tumours. . . . . . . . . . . . . 62
Dr Chilukuri Srinivas and Dr Rakesh Jalali. . 114
n Breaking down barriers in children’s brain tumour treatment by Emma Campbell, Katie Martin and Professor David Walker . . . . . . . . . . . . . 64
n The challenge of brain tumours in Nigeria By Shade Adoh. . . . . . . . . . . . . . . . . . . . . . . 116
n The international low grade glioma registry
by Dr Elizabeth Claus . . . . . . . . . . . . . . . . . . 38
n With a little help from my friends by Professor Terri Armstrong . . . . . . . . . . . . . 66
n A short history of the last fifteen years
of glioma treatment in Hong Kong by Dr Danny T M Chan . . . . . . . . . . . . . . . . . 40
n Liquid biopsy of cerebrospinal fluid by Dr Joan Seoane. . . . . . . . . . . . . . . . . . . . . 68
n Meagan’s Walk: then, now, next by Blair Day. . . . . . . . . . . . . . . . . . . . . . . . . . 118 n Directory of brain tumour patient and caregiver advocacy, support fundraising and information organisations and Initiatives. . . . . . . . . . . . . . . . . . . . . . . . 120
Cover photograph: Keiko Guest Photography www.keikoguestphotography.com Magazine design by Edwina Kelly, email: edwina@edwinakellydesign.co.uk Brain Tumour
3