Neoplasia

ISSUE 1 | 2019

MAKNA | MAJLIS KANSER NASIONAL | NATIONAL CANCER COUNCIL

WHAT’S NEW

MAKNA & AirAsia continue

THE FIGHT AGAINST CANCER

Together for The Third Year

FRESH OFF THE LAB

MAKNA

EMPOWERS YOUNG SCIENTISTS

to Advance Cancer Research Page 11

Page 05

VOLUNTEER ACROSS THE SEA

LAUGHTER:

An unconventional but effective way to heal Page 21 23

ON THE COVER

SOCIAL INNOVATION IN THE MALAYSIAN NON PROFIT SECTOR:

A ROADMAP TO SCALING IN THE DIGITAL AGE, AND THE FUTURE OF SOCIAL WORK Page 16

To All Our Wonderful Volunteers:

THANK YOU!

Page 33

Contents

01 FROM THE PRESIDENT’S DESK

WHAT’S NEW 05 MAKNA & AirAsia continue The Fight Against Cancer Together for The Third Year Eyes on MAKNA and 07 Malaysia’s Non-Profit Organisations Scania Malaysia Honours 09 Director’s Life by Supporting Our Research Team FRESH OFF THE LAB 11 MAKNA Empowers Young Scientists to Advance Cancer Research 13 Medulloblastoma: A paediatric brain tumour that can be mistaken as minor health problems ON THE COVER 16 Social Innovation in the Malaysian Non Profit sector: A roadmap to scaling in the Digital Age, and the future of social work ACROSS THE SEA 21 Laughter: An unconventional but effective way to heal 24 We Are MAKNA Vietnam - Together We Fight Against Cancer

Editorial Penasihat / Advisors Dato’ Mohd Farid Ariffin Farahida Mohd Farid Editorial Leidys Márquez Penyumbang / Contributors Choo Chin Ting Hai Nguyen Van Noor Faiza Abd Aziz Nurtasya Aqilah Mustafa Timothy Dharvind Denis Vemanna Appannah

LIFE GOES ON 25 Courage and Endurance: The Story of a Warrior VOLUNTEER 28 In MAKNA’s Heart, Volunteers are the P.U.L.S.E. 31 Our Award-Winning Volunteer on her Life-Changing journey with MAKNA 33 To All Our Wonderful Volunteers: Thank You!

IMPORTANT MESSAGE: The content here is general in nature and is provided for information purpose only. It is not a substitute for professional medical advice. Please consult your physician on any questions or concerns you may have regarding your health.

Diterbitkan oleh / Published by National Cancer Council (MAKNA) BG 03A & 05, Ground Floor, Megan Ambassy, 225 Jalan Ampang, 50450 Kuala Lumpur.

T +603-2162 9178 F +603-2162 9203 E makna@makna.org.my www.makna.org.my www.facebook.com/maknacancer www.twitter.com/maknacancer Rekacipta / Design SG Global Support Services Sdn Bhd Level 18, Axiata Tower, No. 9 Jalan Stesen Sentral 5, KL Sentral, 50470 Kuala Lumpur.

T +603-2260 1717 F +603 2260 2211 www.sgglobalsupport.com

President’s D esk Desk DATO’ MOHD FARID ARIFFIN FOUNDER & PRESIDENT MAKNA

01 | NEOPLASIA ISSUE 1/2019

MAKE CHANGE A POSITIVE TOOL

JADIKAN PERUBAHAN SESUATU YANG POSITIF

Dear friends,

Rakan-rakan yang saya hormati,

We live in times of great change as we have witnessed in our country over the past year. Life is such and one must always be prepared. As the Greek philosopher, Heraclitus famously quoted: “Change is the only constant in life”.

Kita hidup dalam zaman yang telah banyak berubah, malah kita sendiri menyaksikan perubahan di negara kita sejak setahun lalu.

Begitulah lumrah kehidupan dan kita mestilah sentiasa bersedia menghadapinya. Ahli falsafah Yunani, Heraclitus, pernah berkata: “Yang tetap dalam kehidupan ialah perubahan”.

At 76, I have seen a lot of changes in the cancer universe and the social sector of our country, but to witness such change in the government; I did not expect that. It all just goes to show that life is wrought with uncertainties; and they are all part of being human. They constitute our process of growth, and change; to become more resilient, more relevant, and especially more prepared and calm when unexpected things happen.

This is the same spirit we all need to have in the cancer control world. Sometimes it goes our way, and sometimes it doesn’t; but it is how you handle yourself in times of unanticipated changes, what determines your future. Wisdom can only come from such circumstances. Adversity and change are also filled with opportunities, and knowledge.

I pray that we will keep on moving forward to help as many cancer patients as possible; with the same zeal and enthusiasm as we had 25 years ago, regardless of any political climate.

At the end of the day; this battle is won by the survivors, their families; and all of society.

I am proud to still be a part of MAKNA. Even if I may not be as strong as I was some years ago, the passion for this cause still burns bright in my heart.

To all our benefactors: Thank you for the unwavering support; having your contribution has made this dream a long lasting reality.

Pada usia 76 tahun ini, saya telah menyaksikan banyak perubahan dalam hal berkaitan kanser dan sektor sosial di negara kita, tetapi saya tidak pernah menyangka bahawa saya akan menyaksikan perubahan dalam kerajaan. Ini membuktikan bahawa kehidupan ini penuh dengan ketidaktentuan; sebagaimana hukum alam. Itu merupakan sebahagian daripada proses kematangan kita – untuk membuat kita menjadi lebih lasak, lebih relevan dan lebih bersedia dan tenang apabila berlakunya sesuatu yang tidak diduga.

Semangat inilah yang kita perlukan dalam menghadapi kanser. Kita merancang, kadangkala perancangan itu menjadi dan kadang kala tidak. Bagaimana anda mengendalikan masalah ketika timbulnya perubahan yang tidak dijangka itulah yang menentukan masa depan anda, Kebijaksanaan datang daripada keadaan yang sedemikian. Kesulitan dan perubahan juga penuh dengan peluang dan pengetahuan.

Saya berdoa agar kita akan terus maju ke hadapan dalam membantu seramai mungkin pesakit kanser dengan semangat dan keterujaan yang sama seperti 25 tahun dahulu, tanpa mengira keadaan politik kerana akhirnya, kejayaan melawan kanser ini nanti sungguh bermakna buat pesakit, keluarga mereka dan seluruh masyarakat.

Saya berbangga kerana masih menjadi sebahagian daripada MAKNA. Walau pun saya tidak sekuat dahulu, semangat saya dalam perjuangan ini masih membara di hati saya.

Kepada semua dermawan: Terima kasih atas sokongan yang tidak berbelah bahagi; sumbangan anda semua telah menjadikan impian ini satu realiti yang masih berterusan.

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让改变成为一个正面 的工具

மாற்றத்தை ஒரு உறுதியான கருவ ியாக ஆக்குவ ீர்.

亲爱的朋友们，

அன் புக்குர ிய நண்பர்களே

在过去一年里，我们不但见证了我们国家 巨大的变化时期。也生活在这巨变当中。人 生就是这样，因此我们必须随时做好准 备。就如希腊哲学家赫拉克利特斯的一句 名言： “变化是人生中唯一不变的”。 76岁的我，见证过癌症世界和我们国家社 会领域的很多变化，但见证政府的这种变 化是我不曾预期的。 这一切只是证明了人 生充满了很多不确定；而这些都是做人的 一部分。它们构成了我们成长的过程和变 化；当意想不到的事情发生时，让我们变得 更有弹性、更能对应，以及更有准备和保 持冷静。 这与我们在癌症控制领域需要具备的精神 是相同的。我们计划；有时计划会顺利进 行，有时不会；但这就是自己如何应对未曾 预料到的变化的时机了，而这也是决定你 未来的因素。 智慧只会在这种变化情况衍 生而来。 逆境和变化也充满了机遇和知 识。 我祈祷我们的使命将继续前进，凭着与25 年前一样的热情和热忱，尽可能帮助更多 癌症患者，无论政治环境如何。最终，这场 战斗是由幸存者和其家人，以及社会所赢 得的会。 我以自己仍是MAKNA的一分子为傲。 即 使我可能不像几年前那样强壮了，但我对 这事业仍充满热忱。 致我们所有的赞助者：感谢您们坚定不移 的支持; 您们的贡献使这个梦想成为一个 持久的现实。

கடந்த ஆண்டு நம் நாட் டின் ந ிலைமையை வைத் துப் பார்த்தால் , நாம் ஒரு மாபெரும் மாற்றம் ந ிறைந்த தருனத்தில் இருக்கிற�ோம் . இதுதான் வாழ் ககை ் . எப�்போதும் எதற்கும் தயாராக இருக்க வேண்டும் . கிரீக் தத் துவ ஞான ி Heraclitus கூறியது ப�ோல் “மாற்றம் ஒன் றே மாறாது” என் 76-ஆம் வயதில் புற்று ந�ோய் ந ிலைய ிலும் , நாட் டின் சமுதாய ப ிர ிவ ிலும் பல மாற்றங் களை கண்டு வ ிட்டேன் . அரசாங் கத்தி லும் இதைக் காண்கிறேன் . இதை நான் எதிர் பார்க்கவ ில் லை. இதேல் லாம் , வாழக்கை என்பது ஒரு ந ிச்சயமில் லாத ஓன்று என் பதைக் காட் டுகிறது. இதேல் லாம் மன ித இனத்தின் ஒரு பகுதி. எதிர்பாராத ஓன்று ந ிகழும�்போது, அதை எதிர் க�ொள் வதற்ககு ் ம் தயாராக இருப் பதற்கும் நம் வளர்ச்சியும் , மாற்றங் களும் அமைகின் றன. புற்றுந�ோய் உலகத்தை ந ிர்வகிப் பதற்கு இதே மன ந ிலைதான் நமக்குத் தேவைப் படுகிறது. நாம் திட் டமிடுவ�ோம் ; சில நேரம் நாம் ந ினைத்தபடி நடக்கிறது. சில நேரம் நடப் பதில் லை. உங் கள் எதிர்காலத்தை ந ிர்ணய ிப் பதற்கு எதிர்பாராத மாற்றங் களை எப் படி கையாளுகிறீர்கல் என்பதை ப�ொறுத்த து. சூழ் ந ிலைக்கு ஏற்றவாருதான் வ ிவேகம் ஏற்படும் . இன்னல் மற்றும் மாற்றங் கள் , வாய் ப்பு, அறிவுடமைய ில் உள் ளடங் கியது. முடிந்தவரை புற்றுந�ோய் ந�ோயாள ிகளுக்கு உதவ ி செய் ய முன் செல் வதற்கு ப ிராத்திக்கிறேன் . அரசியல் தலைய டு ீ ஏதும் இல் லாமல் 25-ஆண்டுகளுக்கு முன் இருந்த அதே ஆர்வத�்தோடு முன் செல�்வோம் . இறுதிய ில் இந்த ப�ோராட் டதில் ந�ோய ிலிருந் து வ ிடுபட் டவர்களும் . அவர்கள் குடும் பத்தினரும் , எல் லா சமுதாயத்தினரும் வெற்றி பெறுவர்.

MAKNA -வ�ோடு நான் இன் னும் இணைந்திருப் பதற்கு பெருமைப் படுகிறேன் . சில ஆண்டுகளுக்கு முன்பு இருந்த வேகம் தர்ச்சமயம் இல் லா வ ிட் டாலும் , த�ொண்டு செய் வதில் தீவ ிர ஆர்வம் இன் னும் ப ிரகாசமாக என் உள் ளத்தில் எர ிகிறது. எல் லா நன�்கொடையாளர்களுக்கும் : உங் கள ின் அன் பான ஆதரவுக்கும் , தங் கள ின் நன�்கொடையால் எங் கள ின் கனவு நீ ண்ட நாள் ந ிலைத்திருக்கும் என் ற நம் ப ிக்கைய ில் மானமார்ந்த நன் றியை தெர ிவ ித் துக் க�ொள் கிறேன் .

03 | NEOPLASIA ISSUE 1/2019

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MAKNA & AIRASIA CONTINUE THE FIGHT AGAINST CANCER

together for the third year

AirAsia’s loyalty programme, AirAsia BIG Loyalty, also presented two million AirAsia BIG Points to MAKNA to provide cancer patients with air travel options.

05 | NEOPLASIA ISSUE 1/2019

WHAT’S NEW

For three years in a row, AirAsia has partnered with MAKNA in the fight against Cancer. Fundraising to support the cause, and leading campaigns to raise awareness on the disease, have been two of the biggest contributions of the airline.

AirAsia delivered their contribution of RM 300,300 for MAKNA in an event held at IOI City Mall in Putrajaya. The funds were raised thanks to the campaign #AirAsiaMAKNA and the sales of the limited edition Pilot and Cabin Crew design t-shirts.

The check was presented by AirAsia Philippines Chairwoman and cancer fighter Marianne ‘Maan’ B Hontiveros, AirAsia Malaysia CEO Riad Asmat, and AirAsia X Malaysia CEO Benyamin Ismail, to MAKNA General Manager Farahida Mohd Farid at the ‘#AirAsiaMAKNA: The Big Fight Fiesta’.

“Cancer is a worldwide health concern affecting people of all ages, directly or indirectly. At AirAsia itself, we have many cancer survivors who never cease to inspire us with their tenacity and positivity. With our very own friends at work battling the disease, we knew that something had to be done to also help those going through the big C in the communities we serve”, said AirAsia Malaysia CEO Riad Asmat.

Visitors to the event were treated to an educational day filled with activities such as health talks, clinical examinations, cancer exhibitions, special discounts for health products and even music.

Popular local artists SonaOne, Alif Satar and Ismail Izzani also attended and showed their support to the cancer cause with live performances.

“This campaign isn’t about money. Initiatives like these go beyond that. Our alliance with AirAsia ultimately translates into saving lives and making a positive impact on cancer patients. Now, Malaysians can fly and make a social impact by touching a patient’s life.

It’s an opportunity for everyone to help someone. AirAsia is truly a (big heart) organisation that has kept business and human touch in sync - that’s why we work so well together. Thank you AirAsia, for making our cause your own. It is an honour serving with you”, said MAKNA General Manager, Farahida Mohd Farid.

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eyes on

MAKNA

and MALAYSIA’S

NON-PROFIT

07 | NEOPLASIA ISSUE 1/2019

ORGANISATIONS

WHAT’S NEW

MAKNA was recognized with the Golden Globe Tigers Award for NGO Leadership by the World CSR Day Organization from India. The Award ceremony was held at Pullman Hotel where the work of other outstanding organizations was also acknowledged.

The Golden Globe Tigers Awards is a set of international recognitions for organizational excellence that has been highlighting Asian organizations since 2013. The award for NGO Leadership came as a surprise for MAKNA, because the recognition was granted without submitting an application for it, which ultimately means that the NGO sector of Malaysia doesn’t go unnoticed from peer organizations across Asia.

The Malaysian social sector has had a significant growth in the last couple of years, and this has been translated into more development for social initiatives in South East Asia. Particularly for MAKNA’s cause, recognitions like The Golden Globe Tigers Award mean more than just the credit given to the organization. In a larger scale, this acknowledgment signifies more attention for Cancer Control.

When asked about the reasons to recognize an organization like MAKNA, Dr. R.L. Bathia, Founder of World CSR Day Organization said: “People need to believe that Cancer is curable. People need to believe that through treatment and care, they can beat Cancer and make a transition to a happier life. MAKNA does a good job in bringing this type of hope for their patients and it’s our choice to recognize their work and efforts, to encourage them to continue with their work”.

Perhaps, with the spotlight put on the fight against Cancer in Malaysia, the importance of more inclusion of vulnerable communities, and better access to Cancer treatment will be brought to Asia’s attention – with Malaysia as an example.

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Scania Malaysia

HONOURS DIRECTOR’S LIFE BY SUPPORTING OUR RESEARCH TEAM 09 | NEOPLASIA ISSUE 1/2019

WHAT’S NEW

To commemorate Gary Archer’s life, his colleagues from Scania Southeast Asia decided to honour his memory with a donation to MAKNA. The late Gary Archer was known for his generosity and diligence both as a professional and as a human being. His teammates and co-workers decided to celebrate his legacy in the company and their lives, by supporting the Research Department of MAKNA with a RM 4,196.00 donation.

Gary fought bravely in a battle against the sudden onset of cancer in his brain. After a couple of months of treatment, Gary was strong enough to rejoin his company and the recovery seemed to be making progress. Unfortunately, cancer made its way to other organs and he passed away in 2017.

To the Archer family and Scania team: Our heartfelt condolences and all our gratitude for your kind gesture. Your support allows our researchers to continue moving forward to a breakthrough and perhaps even a cure for cancer.

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MAKNA EMPOWERS YOUNG SCIENTISTS

TO ADVANCE CANCER RESEARCH For 17 years MAKNA has been supporting young Cancer scientists in Malaysia, by funding their research with grants. The three recipients chosen in 2018 will get funds close to RM 90,000 to sustain their work.

The MAKNA Cancer Research Award (MCRA) was initiated in 2001, to encourage and recognize the importance of research and development conducted by local scientists.

The selection of the recipients was conducted by a distinguished panel headed 11 | NEOPLASIA ISSUE 1/2019

by the Academy of Sciences Malaysia (ASM) Fellow, Professor Datin Paduka Dr Khatijah Mohd Yusoff FASc, alongside other prominent ASM Fellows. MAKNA received 85 applications for this award in 2017 – the largest number of applications received so far.

The recipients for the 2017 award are Mr. Conlathan A/L Ibau (Universiti Malaysia Perlis), who is awarded RM 27,295, Dr. Kue Chin Siang (Management and Science University), awarded with RM 29,480 and Dr. Abdullah Al-hadi Bin Ahmad Fuaad (University of Malaya) with RM 30,000.

FRESH OFF THE LAB

MAKNA Founder and President, Dato’ Mohd Farid Ariffin said: “This award has been a part of our research-mission endeavours, which include collaborations with universities and research institutes in Malaysia to advance knowledge in the field in the hopes of helping cancer patients throughout the country and finding a potential curative treatment for cancer.”

Since it’s introduction in 2001, MAKNA has awarded a total of RM 1,461,410 towards funding cancer research by young researchers in Malaysia. To-date, the programme has funded 51 researchers in all. Focusing on research is in line with the MAKNA mission, which is to mobilise all resources to provide curative, preventive research and support services to cancer patients and families, high-risk groups and the general public.

The Academy of Sciences Malaysia partnered with MAKNA to ensure that the MAKNA Cancer Research Award reaches its purpose.

The Academy supports MAKNA’s initiative in funding cancer research, and for the last 17 years it has been a successful journey in pursuing scientific excellence especially for young scientists. It is hoped that the Academy’s association with awards such as the MAKNA Cancer Research Award will provide these young scientists great value propositions, to making significant scientific breakthroughs.

– Academician Tan Sri Ir TS Ahmad Zaidee Laidin FASc (Secretary General of ASM)

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Medulloblastoma :

A PAEDIATRIC BRAIN TUMOUR THAT CAN BE MISTAKEN AS MINOR HEALTH PROBLEMS

The Medulloblastoma Paediatric brain tumour is the second most common tumour in children after Leukaemia and the most common solid tumour in children.

Of all brain tumours in children, Pilocytic Astrocytoma (Figure 1) is most frequent, followed by Medulloblastoma (Figure 2). In Malaysia, studies showed that 45% of brain tumours in children younger than 15 years of age, are Medulloblastoma, while 36% are Astrocytoma.

Children with Medulloblastoma present one or more of the following symptoms: Headache, morning nausea and vomiting that gets worse gradually, clumsiness, and visual problems. In advanced stages of the disease, they may develop difficulty in walking, back pain, and inability to control bladder and bowel functions. As the presenting symptoms may be quite subtle, it can be mistaken for less aggressive diseases, leading to a delay in proper diagnosis.

13 | NEOPLASIA ISSUE 1/2019

Medulloblastoma was first described by Bailey and Cushing in 1925, as a rapidly growing tumour of the cerebellum in children. They called it Spongioblastoma because it is soft and can be removed by suction.

This type of tumour is slightly more common in males, and many occur in children younger than 5 years old. The majority of the cases arise from cerebellar vermis - which means, the tumour starts in the part of the brain that is in charge of the sense of balance.

Cerebrospinal fluid involvement at presentation is seen in one third of the cases.

This type of tumour is highly aggressive.

According to studies; the 5-year survival rate is about 60%.

With advances in molecular analysis, it is currently recognized that Medulloblastoma is a heterogeneous tumour, characterised by molecular subgroups with distinct gene expression profiles. This implies that the tumour may vary in biological behaviour and it could even react differently to different types of treatment.

FRESH OFF THE LAB

DIAGNOSIS In previous years, the diagnosis of brain tumours relied mainly on histology, but in 2014, the international Society of Neuropathology established guidelines by incorporating molecular findings into brain tumour diagnosis. This leads to the current update in the 2016 WHO classification of CNS tumours, which included molecular parameters along with histology in the definition of tumour entities.

As a patient, this means that if the diagnosis is more specific, it would be possible to better understand the characteristics of the cancer and therefore, more effective treatment would be provided for the disease.

Figure 1: Pilocytic astrocytoma. This tumour is sparsely cellular and demonstrates cystic spaces with a fibrillary background.

Classically, Medulloblastoma is divided into 4 histologic variants (classic, desmoplastic nodular, extensive nodularity and large cell/ anaplastic). It is now accepted that there are 4 molecular subgroups (WNT-activated, SHH-activated, group 3 and group 4). With this addition, pathologists need to provide an integrated diagnosis that includes combined histological-molecular findings.

Mostdesmoplastic nodular Medulloblastomas are SHH tumors, while most WNT and group 3/4 tumours are classic phenotype. By using a combination of immunohistochemical studies that include Ă&#x;-catenin, GAB1 and YAP1, this tumour can be divided into its molecular subgroups.

Figure 2: Medulloblastoma. This tumour is highly cellular and demonstrates sheets of malignant small round cells with darkly stained nuclei.

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ASSOCIATED RISKS There are 3 syndromes that are associated with Medulloblastoma, namely Gorlin syndrome, Turcot syndrome and Li Fraumeni syndrome. Individuals with Gorlin syndrome have multiple skin, dental, brain, and cardiac/ ovarian tumours. Turcot syndrome is found to have multiple colon and brain tumours, closely associated with Lynch syndrome and Familial Adenomatous Polyposis (FAP). Studies on mutation related to Turcot syndrome lead to the discovery of the WNT pathway.

By identification of the molecular subgroups in Medulloblastoma, the likely course of the condition can be determined. For example, WNT-activated Medulloblastoma with classic morphology is associated with low risk disease, and good outcome with standard therapy. This means that in the future the treatment could be less intensive, than the treatment for other more aggressive forms of Medulloblastoma. Currently, multiple studies are looking into the feasibility of less intensive chemotherapy for WNT-activated Medulloblastoma.

This method can be used to guide treatment options. The challenges of implementation of combined genotypic and phenotypic diagnosis are largely the availability of molecular service, immunohistochemical surrogates and experienced paediatric pathologists.

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A multi-disciplinary approach with involvement of neurosurgeon, radiologist, oncologist and pathologist is required to achieve a successful outcome. Treatment is by a combination of surgery, radiotherapy and chemotherapy.

Great strides have been made in a more accurate diagnosis of Medulloblastoma, which ultimately translate into better and more effective treatment for the patients with this brain tumour. As a result of the subtle signs and symptoms, the diagnosis can be delayed. It is important to promptly seek for medical advice if you suspect your child has the above symptoms.

*Corresponding Author Geok Chin Tan, MBBS, PhD Associate Professor and Consultant Pathologist Department of Pathology, UKM Medical Center, Jalan Yaacob Latif, Bandar Tun Razak, 56000 Kuala Lumpur. Malaysia Email address: tangc@ppukm.ukm.edu.my Dr Tan obtained his Paediatric Pathology training in Nationwide Children’s Hospital, Columbus, Ohio, United States.

His research interest is in Paediatric and Gynaecology related diseases.

ON THE COVER

SOCIAL INNOVATION IN THE MALAYSIAN NON PROFIT SECTOR: A ROADMAP TO SCALING IN THE DIGITAL AGE, AND THE FUTURE OF SOCIAL WORK

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MAKNA hosted the second Not-for-Profit (NPO) gathering: “The Uncommon Good” Roundtable 2018.

The event took place at Kuala Lumpur Convention Centre, and it opened a space for some of Malaysia’s biggest NPOs to discuss about Innovation and Scaling in the Digital Age. The roundtable aimed to build on the conclusions from “The Uncommon Good NPO Forum 2017”. The NPOs discussed the strategies implemented to develop socially valuable initiatives; and the inclusion of new technologies, as critical components to innovation.

Unlike the first edition, in which a forum took place, this time the 17 | NEOPLASIA ISSUE 1/2019

discussion was changed to a roundtable format; in order to have a more productive and proactive dialogue.

The roundtable was chaired by the leadership coach, tv host and BFM radio contributor, Shankar R. Santhiram. Deputy Director of the University of Hong Kong (HKU), Dr. Lori Noguchi participated as an international speaker; and iFirst International Managing Director, Dr. Sudeep Mohandas took part as the moderator for the discussion.

Among the attendees were representatives from NPOs such as Mercy Malaysia, Yayasan Hasanah, The Budimas Charitable Foundation, Teach For Malaysia, NGOHub, Sols 24/7, HOSPIS Malaysia, World Wildlife Federation (WWF), All Women’s Action Society (AWAM), End CSEC Network Malaysia, and National Cancer Society Malaysia (NCSM).

ON THE COVER

MAKNA’s General Manager, Pn. Farahida Mohd. Farid said about the topic:

Today, technology is available for everyone. Not only do the big corporations have access to tools, but now the social sector can access them as well. It’s time for our sector to integrate these advances in our day to day operations. Spaces like this roundtable open conversations, and help in creating a more cohesive social industry; where we share ideas and experiences that build up solutions for everyone.

BUT, WHAT DOES THIS REALLY MEAN? For the Malaysian social sector, the impact of a dialogue like “The Uncommon Good Roundtable 2018” is reflected in several different areas. First and foremost, the aim of building a more cohesive social sector, for example, is reinforced with efforts of this sort.

“Creating a collaborative platform, where Non-Profits can learn from each other and at the same time share their struggles, is priceless for the sector. Charities don’t have to work by themselves anymore. If we can bridge the gap to build deeper relationships among the non-profits to get involved with each other’s work - that’s already a huge win for the sector” explains Camilo Cupitre, MAKNA Research Associate.

“Being able to learn from panellists is also a big plus. Having everyone seated on the same table, discussing their problems and having experts share their knowledge definitely proved to be helpful, that’s where partners like Dr. Lori Noguchi, from Hong Kong University, step in to support our initiative” – He added.

From the discussion many interesting points were brought to the table. According to speaker Imron Zuhri, Co-Founder & CTO of Dattabot and HARA in Indonesia – Technology is no longer an elitist kind of tool. “There are solutions available for all types of organizations and especially for all budgets. The Digital Age has made great improvements in the way technology WWW.MAKNA.ORG.MY | 18

is made available. Emerging Technologies are no secret for anyone anymore. Today is perhaps the best time to scale in tech matters, and also the most affordable it’s ever been”.

As a conclusion to the Roundtable two main things were learnt. First: The NonProfit sector has no reason to fear the Digital Age, as there are ways to access technological advances without breaking the bank, and second: The need for Malaysian Social Sector to start riding the tech wave is critical. If a change of mindset doesn’t come, charitable work will become outdated and therefore inefficient in the coming years. So the time for change is now.

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ON THE COVER

HONG KONG UNIVERSITY CAME TO TEACH, BUT ALSO TO LEARN In conjunction with “The Uncommon Good” Roundtable 2018, the delegation from the Masters in Social Innovation of Hong Kong University paid a visit to MAKNA. Although the delegation led by its Deputy Director, Dr. Lori Noguchi came initially to participate in the Roundtable and share their academic knowledge on social innovation, they decided to come to MAKNA’s HQ (as well as other organizations) to learn more about social work and socially impactful initiatives in Malaysia.

The visit was fruitful for both parties, as the stories from the NGOs visited, made it clear that Malaysia is a solid and fertile soil for social work.

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Laughter :

AN UNCONVENTIONAL BUT EFFECTIVE WAY

to heal

By Hai Nguyen Van, Branch Manager, MAKNA Vietnam.

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ACROSS THE SEA

On a monthly basis, our MAKNA volunteers continue their regular outreach services to support patients and their families, at the National Cancer Hospital. We rotate around different departments each month.

In July, we stopped by the radiotherapy ward for the neck and head region with a group of new MAKNA volunteers.

New MAKNA volunteers who are medical students from Hanoi Medical University, in Vietnam found it surprising that we did not bring any other medicine or equipment to support the patients, but laughter. The surprise could also be seen in the faces of the patients, who had expected more material support rather than emotional one. As mentioned by Nobel Prize winner Elizabeth Blackburn, it is proven that toxic thoughts can be detrimental to health.

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In her book named: THE TELOMERE EFFECT: A REVOLUTIONARY APPROACH TO LIVING YOUNGER, HEALTHIER, LONGER, she stresses: “Your cells are listening to your thoughts.”

Our MAKNA volunteers’ mission is to bring support to cancer patients and help them fight cancer and reduce related pain, through working with their minds and mood.

We bring diet information to patients, so they know what’s suitable for them before, during and after cancer treatment. We do our best to inspire them with touching stories shared by cancer survivors. We guide them in the practice of Laughter Yoga.

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We instruct them on how to stay healthier.

This kind of support brings to mind Elizabeth Blackburn’s conclusion:

“People want to live to 100 years old, the effects of psychological balance accounted for more than 50%, a reasonable diet accounted for 25%, accounting for 25% of the other”.

We are happy to make a small contribution to help cancer patients, and our mission continues each month to try and reach as many patients as possible.

ACROSS THE SEA

Together we fight WE ARE MAKNA VIETNAM AGAINST CANCER

By: Nguyen Thi My Linh MAKNA volunteer - Electric Power University

When I first visited K Hospital-Tan Trieu Campus, I could only see people’s distress and sadness. However, thanks to the discussions with cancer patients, my first impression has completely changed.

Despite their disease and life challenges, most of the cancer patients remain positive, express their desire to live, and never forget to present their bright smiles to others. Their loving eyes are more beautiful and precious than any jewelry. During a monthly MAKNA Cancer Patient Support event at K Hospital-Tan Trieu Campus, a cancer patient told me

“Your sunshine smile inspires my feelings of positive optimism and love for life. Thank you, my dear!”

It was such a wonderful and unforgettable volunteering memory.

By sharing our time with cancer patients, my friends and I are strongly committed to volunteer work so that we could do more to support those brave warriors. We will try with full effort to fight for cancer patients’ mental strength.

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COURAGE AND ENDURANCE:

THE STORY OF A WARRIOR

I’m Rohany Binti Gabi. I am 26 years old from Keningau, and my passion is motivating people.

I have been invited to several motivation programs where I share my story and I am a peer supporter for Malaysia Invisible Illness Association (MIIA).

I am a Cancer warrior in Final Stage. I love to say “warrior” 25 | NEOPLASIA ISSUE 1/2019

instead of survivor, for my view of the fight against the big C is like that of King David and Goliath in the bible. So, I like the biblical story, as small as I may be, I would never give up; I’ll fight no matter how this story ends.

I was diagnosed with bone cancer or osteosarcoma at the age of 12 (in 2004).

The Cancer had spread to my lungs and other vital organs. I had to go through major and minor surgeries for more than 10 times in order to save my life. I have spent half of my life in a hospital.

LIFE GOES ON

In December 2013, I was finally declared cancer free, I was 21 years old. Professor Dr. Pan Kok Long (who is now retired) in Sarawak General Hospital gave me the news. I had faced a painfully long time of battles against one of the most feared illnesses in the world -and yet I had won.

Once my health was sorted, other challenges came. At 21, I had no UPSR, Form Three or PMR. There was a moment when my record in school was deleted because they thought I had passed away. However, shuffling through my schoolbooks between therapies has given me a bachelor’s degree in History from University Malaysia Sabah (UMS).

I graduated last year, 2017, against all odds.

When I was diagnosed with cancer, I really didn’t know how bad my disease was. It took me a while to understand that I was actually terminally ill. Sometimes I miss the times in which I didn’t fear death.

Being a child and an adult sick with Cancer is very different.

I enjoyed my childhood. It was a much simpler time, in which I didn’t have many things to worry about. But it all fell apart when I found out the reality of my disease.

I was 14 years old and the weight of my condition soon hit me.

Living with cancer is hard when you have less support from family, friends and society. Some of my close friends took distance from me when they found out about my condition. I was also bullied in school.

During my second year with Cancer, I lost my father while I was taking treatment in Sarawak General Hospital. He passed away during work on 31st of July 2006. I have never felt so much pain. I thought about giving up because it didn’t seem like there were reasons for me to live anymore.

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I felt helpless. If my body was dying, I felt like my soul was already dead. I had suicidal thoughts all the time and never shared them with anyone. I was angry at the world and at God, because I thought he had abandoned me.

My reason to keep going was finding God’s message for me in his words. “I LOVE YOU, YOU ARE PRECIOUS, YOU ARE MY CHILD, NO MATTER WHO YOU ARE”. It was written in John 3:16- For God so loved the world that He gave His only begotten Son, that whoever believes in Him should not perish but have everlasting life.

Religion is not everyone’s formula to healing. It doesn’t come in the same way for all persons, but it came like this for me. God’s words felt like written for me to read them, and I held on to them as if it was him speaking to me directly.

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For members and friends out there, please give full support to your family members who are fighting Cancer. Even though I got less support from them during my disease, I do not blame them for they didn’t know what I was going through. Having cancer isn’t the end of life, it’s just a small trial that can make us stronger than we were before. It’s merely the beginning of a new era, of learning, and of understanding. My doctor told me once:

“When there seems to be no way or result, kneel down and pray to God”.

Giving up is not our call. Death is determined by God and not by cancer. Just be strong and have good courage and fight until the end.

heart,

VOLUNTEER

IN MAKNA’S VOLUNTEERS ARE THE P.U.L.S.E. MAKNA celebrated its volunteers with a ceremony to recognize their priceless contribution towards the fight against Cancer. The MAKNA Volunteers Appreciation Award was held at the Horizon Hotel, in Kota Kinabalu in Sabah, where volunteers were acknowledged for their countless contributions.

Volunteers are a vital component of MAKNA. This ceremony was held to thank the volunteers’ hard work in delivering excellent dedication and to recognize their important contribution in helping those in need and to spread cancer awareness altogether.

Volunteers are also invaluable in helping MAKNA to cast a wider net and extend its support to a larger group of cancer patients, as they undergo treatment and to communities in all parts of the country.

With the theme ‘VOLUNTEERS! You are our P.U.L.S.E’, MAKNA wanted to highlight that the volunteer team is Passionate, United, Loving, Serving and Engaging.

MAKNA acknowledged volunteers’ contribution and awarded them accordingly.

The recipients of the awards were selected based on their active involvement

Congratulations!!

Manisseh Yakun (Caregiver, Kota Belud), Rohany Gabi (Final stage, Bone cancer survivor, Keningau), and Pn. Matahari Ismail (Caregiver, Kota Kinabalu) WWW.MAKNA.ORG.MY | 28

Volunteers are real ambassadors of MAKNA, they are the local heroes that go extra miles providing vital services in the community. Volunteers form the backbone of our organization supporting the staff team. MAKNA is very grateful for their work, they embody the kind of values that are important in ensuring our patients receive exactly the type of help they need. Today’s celebration is for them, our volunteers. Thank You! – Pn. Farahida Mohd Farid, General Manager, MAKNA.

in volunteering training, events, administrative work, support and technical services; and community outreach program.

The Special Recognition Award was awarded to Manisseh Yakun, 39 (Caregiver, Kota Belud), Rohany Gabi, 26 (Final stage, Bone cancer survivor, Keningau) and Pn. Matahari Ismail, 42 (Caregiver, Kota Kinabalu). This award honours volunteers for their support to the volunteer group and providing emotional support to cancer patients and their families in coping with cancer.

Juliana Hussin, 32 (Nurse, Queen Elizabeth Hospital, Majais Bin Mayasin, 34 (Water rafting captain), Manniseh Yakun, 39 (Teacher, Kota Belud), Rohany Gabi, 26 (Final stage, Bone cancer survivor, Keningau) and Yorley Sara Francis, 40 (Caterer, 29 | NEOPLASIA ISSUE 1/2019

Penampang) were awarded with Potential Leader Award. Recognized with the Blue Vest, the recipients shall demonstrate leadership in planning, organising and executing assigned MAKNA works under the supervision of their Leaders and in some cases be independent.

The VOLUNTEER LEADERSHIP AWARD was awarded to Puan Matahari Ismail, 42. This recipient has demonstrated leadership in planning, organising and executing MAKNA’s work independently.

Matahari has been an active volunteer with MAKNA since 2010, from the time her uncle was diagnosed with stomach cancer. Her heavy involvement in helping patients and giving her utmost moral support managed to lighten the burden of many patients.

VOLUNTEER

MAKNA’s registered volunteers come from all backgrounds and walks of life. Comprising of working adults, students, teenagers, housewives and even cancer survivors who have come together voluntarily to form the strongest advocates for MAKNA’s activities, aggressively promoting the prevention and early detection of cancer besides sharing experiences and providing moral support to cancer patients that they assist.

Volunteers have been helping MAKNA in various activities such as fundraising, home and hospital visits, community awareness program and support groups. Some of the volunteers are cancer survivors themselves,

sharing their personal experience of struggling with and surviving cancer.

Volunteers demonstrate that volunteering is ‘a work of art’.

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OUR AWARD-WINNING VOLUNTEER ON HER LIFE-CHANGING JOURNEY WITH MAKNA I started my volunteer work not knowing what exactly I was about to encounter. This journey with MAKNA has involved visiting patients in their own homes, and from the beginning I had the feeling I was bound to meet at least one patient who would touch my heart. I was right. Just recently on my voluntary work with MAKNA in Tawau, I met this beautiful, kind, and loving family; but I was saddened to have witnessed their struggle with life financially and physically.

The father of this family is a patient dealing with Glioblastoma, the most aggressive type of cancer. After he was diagnosed, he lost his job as a security guard and with it; the only source of income he had to support his wife and their 4 children. One of the kids is also sick, physically impaired and requires special aid.

It was disheartening to witness the struggle of this father of 4, who fought cancer

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strongly and courageously, but by doing so couldn’t provide for his family. Cancer isn’t only a daily struggle with a disease that can kill you; it’s also a social problem for people like this man. One that involves and affects not only you and your health, but the wellbeing of your entire family, if like him, you’re the head of the household.

In the process of my work with them as a volunteer, I found out that they’re also struggling with an electricity bill that has been long overdue, amounting to RM1, 068.80 – Can you imagine the amount of stress this family goes through? I have pledged to help raising awareness and funds to ease this family’s burden. Understanding that they can’t afford their costs of living, fight against cancer, and provide for their family all at once is the first step. But this is only me and this is only one case of thousands in Malaysia and millions in the world.

VOLUNTEER

The cancer burden truly goes beyond health conditions. Most of us live in abundance our whole lives, not knowing what others suffer.

If you could please take the time to consider contributing to fundraisers like this and to MAKNA, I and many Cancer patients would be eternally grateful. We try our best to help, but we can’t do it alone.

Thank you endlessly: for your love, generosity and support.

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TO ALL OUR WONDERFUL VOLUNTEERS:

Thank You !

The Volunteer Management Unit of MAKNA would like to shout out to all its volunteers both senior and junior for the contribution they’ve made to cancer patients and their families. Volunteers of MAKNA are doing something we call “A work of heart”, in every role they take on through the structured MAKNA Volunteer Module.

We have senior Brown Vest Volunteer Leaders from the North and South who have been for so long with our unit, they have become synonym of the name MAKNA; particularly for patients and survivors. We’ve also heard from people in communities such as Negeri Sembilan, that the only way they came to know about MAKNA was through the support available from our Volunteer Leaders.

In East Malaysia we have Blue Vest Volunteer Leaders who brave the long windy and hilly roads and bush beaten

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trails, to visit cancer patients who receive MAKNA bursary assistance. There have been times where the team has gone on road trips of 8 hours just to visit 1 single recipient, and ensure that the assistance given by MAKNA has truly reached them.

The East Malaysian volunteers have constantly added Community Outreach Programmes to their home visits, and have helped the struggles that the cancer patients and family undergo. Simultaneously they are creating awareness in villages and schools, to promote early detection and early treatment.

We are also proud to blow our trumpets for the new volunteers who have recently joined MAKNA; they have shown tremendous support in all activities, and are not shy to take on lead roles such as conducting and training new volunteers to do home visits in a variety of states; sharing and providing emotional support particularly to

VOLUNTEER

volunteer survivors. They also help creating and setting up Volunteer Cancer Support Groups; fundraising outdoor activities; heading events for campaigns and major meaningful dates such as celebrating World Cancer Day in February and International Volunteers Day. They participate in supporting and committing to MAKNA campaigns such as Re Cycle, Give Cycle and Klimb Kinabalu: Fight against Cancer.

We have volunteers contributing their talent and skills to boost the funds by making quality and reasonably priced merchandise that will surely garner additional funds.

This money will enable us to assist more patients to the best of our abilities.

To register as a volunteer kindly visit our website www.makna.org.my and do the online registration. We will contact you to attend the 3 Compulsory Volunteer Trainings before embarking in the variety of activities available via the structured

MAKNA Volunteer Module. Should you wish to make further inquiries or obtain further details please feel free to contact Priyadarshini Subramaniam, Volunteer Coordinator at priyadarshini@makna.org.my

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Bring a new meaning to life www.makna.org.my/donate

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Your contribution can change lives.

Support our cause, together we can move mountains.

Every ringgit raised from this section will literally transform lives. This is where donations “will never go out of fashion.�

There is so much we can do to fight cancer. Every step you take brings us all closer to a cancer-free future.