Brain Tumour Magazine: World Edition 2014

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Contents WORLD EDITION 2014

n “Staff Sergeant” Andrew Kennedy, Age 7. . . 6

n Glioma and Pregnancy

n Mind the Gap!

n The First World Summit of

By Hanneke Zwinkels. . . . . . . . . . . . . . . . . .46 n An Interview with Dr Tracy Batchelor. . . . . . 48 n Supporting Children with Brain Tumours and Other Cancers in South Africa by Bonita Suckling. . . . . . . . . . . . . . . . . . . . 50 n Deciding What Matters Most in Brain and Spinal Cord Tumour Research. . . . . . . 52 n Understanding Brain Tumor Statistics by Carol Kruchko. . . . . . . . . . . . . . . . . . . . . . 54 n Counting Brain Tumours in Canada by Jennifer Gouchie. . . . . . . . . . . . . . . . . . . 56 n Brain Trekking in Hong Kong by Dr Danny Chan. . . . . . . . . . . . . . . . . . . . .57 n Progress Against Medulloblastoma by Dr Vijay Ramaswamy and Dr Eric Bouffet. . . . . . . . . . . . . . . . . . . . 58 n BETHYD – The Turkish Brain Tumour Patient and Caregivers’ Association by Nihat Karaoglu. . . . . . . . . . . . . . . . . . . . . 60 n An interview with Dr Max Barros. . . . . . . . . 62 n Glucose and Brain Tumours by Dr Minh Thi Tieu & Dr Caroline Chung. . . . . . . . . . . . . . . . . . . . . 64 n Brain Tumour Society (Singapore) – a Seed Grown from the IBTA World Summit by Melissa Lim. . . . . . . . . . . . . . . . . . . . . . . 66 n To the End of the Earth for Ronnie by Niall Roche. . . . . . . . . . . . . . . . . . . . . . . . 68 n Helping Others While Sharing my Passion for Creativity by Kristin Odom . . . . . . . . . . . . . . . . . . . . . . 70 n Captain McGale Has a Brain Tumour by Lia Le Roy. . . . . . . . . . . . . . . . . . . . . . . . . 74 n Music Speaks What Cannot Expressed by Alison Ware. . . . . . . . . . . . . . . . . . . . . . . 76 n Caring for Children and Teenagers with Brain Tumors in Taiwan by Lilyan Song. . . . . . . . . . . . . . . . . . . . . . . . 78 n Now for a Second University Degree after Brain Tumour Surgery by Wallis Stabler. . . . . . . . . . . . . . . . . . . . . . 79

by Dawn Hamill. . . . . . . . . . . . . . . . . . . . . . 80 n Life Before Cancer: a Love Affair With the Past by Karissa Kneeland. . . . . . . . . . . . . . . . . . . 82 n An interview with Dr Robert Fink. . . . . . . . . 84 n Focus on Colombia by Dr Gabriel Vargas. . . . . . . . . . . . . . . . . . . 86 n Brain Tumour Awareness Day in Argentina by Dr Alejandra T Rabadan. . . . . . . . . . . . . 87 n Supporting Organisations for the IBTA’s 2013 Awareness-Raising Activities. . . . . . . 88 n University of Cincinnati (UC) Brain Tumor Center Run/Walk. . . . . . . . . . . . . . . . 89 n Hope vs Realism - a Survey of Brain Tumour Magazine Readers by Denis Strangman. . . . . . . . . . . . . . . . . . . 90 n An Interview with Dr Gaetano Finocchiaro. . . . . . . . . . . . . . . . 92 n Brain Tumors in The Netherlands by Jelle Jan de Vries and John de Bruin. . . 94 n An interview with Dr Erwin G Van Meir. . . . 96 n Brain Tumour Foundation (Cayman Islands) – “The Forgotten” by Brenda J Archer. . . . . . . . . . . . . . . . . . . . 98 n Hunting for Better Therapeutic Targets by Dr Maite Verreault. . . . . . . . . . . . . . . . . 100 n Supporting People with a Diagnosis of a Brain Tumor is my Passion in Life by Cindy Villarreal. . . . . . . . . . . . . . . . . . . . 102 n The Story of Brainwaves NI by Kate Ferguson. . . . . . . . . . . . . . . . . . . . 104 n Walking Around Australia’s Coastline for Brain Tumours. . . . . . . . . . . . 105 n Track the Tractor By Darren Hayes. . . . . . . . . . . . . . . . . . . . . 106 n Supporting Organisations for the IBTA’s 2014 Awareness-Raising Activities. . . . . . 107 n Brain Tumour Organisations Offering Support and Information. . . . . . . 108 n Other Organisations and Sources of Information. . . . . . . . . . . . . . . . 114

Brain Tumour Patient Advocates. . . . . . . . . . 8 n An interview with SNO President Dr David A Reardon . . . . . . . . . . 10 n Amy Pejkovic - Back on Track After Having a Brain Tumour Removed. . . . . . . . 12 n An interview with Dr Patrick Y Wen. . . . . . . 14 n Why Not Me? by Lynda Tse. . . . . . . . . . . . . . . . . . . . . . . . . 16 n The IBTA Year. . . . . . . . . . . . . . . . . . . . . . . . . 18 n EORTC’s SPECTAbrain for Patients with Neurological Cancers by John Bean. . . . . . . . . . . . . . . . . . . . . . . . .20 n Navigating Your Way Through Brain Tumor Online Support Groups by Al Musella. . . . . . . . . . . . . . . . . . . . . . . . . 22 n Our Dad by Ga Vin and Ga Rick Lee. . . . . . . . . . . . . 25 n An interview with Dr Rahul Krishnatry. . . . . 26 n An Interview with Dr Keith L Black. . . . . . . . 28 n Don’t Frown Because it’s Over… Smile Because it Happened by Bunny Leach. . . . . . . . . . . . . . . . . . . . . . 30 n RANO Criteria: a New Yardstick to Measure Benefit of Treatment by Dr Kurt A Jaeckle . . . . . . . . . . . . . . . . . . . 32 n A Test of Courage and Strength by Mary Ellen Maher. . . . . . . . . . . . . . . . . . 34 n Good Genetics or a Good Marriage: What’s More Important in Surviving Glioblastoma? by Dr Virginia Stark-Vance. . . . . . . . . . . . . . . 36 n Grandma, the Neurosurgeon, a Tree and Me by Lanette Veres. . . . . . . . . . . . . . . . . . . . . . 38 n “Overcoming a brain tumor has been my greatest triumph and source of strength” by Zack Hubbard. . . . . . . . . . . . . . . . . . . . . .40 n 5-ALA: An Aid for Identifying the Infiltrative Margins of Malignant Glioma By Professor Walter Stummer. . . . . . . . . . . 42 n An interview with Dr Jonathan Finlay. . . . . 44

Cover photo: “Staff Sergeant” Andrew Kennedy (age 7) and Royal Canadian Mounted Police Constable Jeff Wilson. Photo courtesy of Brian Taylor, email brian@taylorphoto.ca Magazine design by Edwina Kelly, email: edwina@edwinakellydesign.co.uk Brain Tumour

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