2021_12_DASH Newsletter_final

JULY TO DEC 2021

beyond
the

cord

NEWSLETTER

INDEX

Foreword by PDG Leslie Salehuddin and Ir Dr Kribanandan G N Page 1
Global Grant Official Launch Page 2
Global Grant Official Launch Page 3
Global Grant Official Launch Page 4
Testimonials Page 5
Testimonials Page 6
Webinars series by Healthcare committee Page 7-8
Importance of Daily Life Activities by Puan Nur Khalilatul Amla Page 9
Neurogenic Bowel Management by Dr Brenda Saria Page 10
Pandemic Assistance by Sibiam-DASH-Rotary Page 11
More Team Members Page 12-13
IF's WSBHD Celebration and Sibiam's participation Page 14
World Spina Bifida and Hydrocephalus local event celebration Page 15-17
WSBHD Summary article Page 18
Donation from B.Braun Medical Supplies Sdn Bhd Page 19

Get in touch with us Page 22

00 | APRIL - JUNE 2021

FOREWORD

PDG Leslie Salehuddin

ADVISOR TO DASH, DRFC RY 18-21

As I am writing this brief foreword, the International Federation for Spina Bifida
and Hydrocephalus has designated today 25 October as World Spina Bifida and
Hydrocephalus Day (WSBHD2021) with the theme “Unlock your Right to
Health”.
For some reason a number of international health days are held in October and
some of these have special significance to Rotarians at large and our various
District Action Groups.

We had celebrated World Mental Health and World Sight Days on 10 October
and 14 October respectively. World Polio Day on 24 October with a number of
events observing these two days amongst the Rotary communities world over

Our partner, SIBIAM has taken the lead in organising the WSBHD 2021 on Saturday 30 October and DASH
was also involved in the activities filled morning programme with a prize giving ceremony for the winners
of the various competitions amongst the younger SB family members.
I was overjoyed to have played a small role in my first WSBHD 2021 celebration and look forward to
having all our DASH members lending support and also the D3310 Rotarians who are our core team in our
outreach programme.

With this event which we will celebrate annually, we hope to create yet greater awareness amongst the
general public on Spina Bifida and Hydrocephalus and the challenges posed to the families of the SBH
community. We also hope to involve more Rotary clubs and have a greater geographical spread nationwide
in the coming year.

Ir Dr Kribanandan G N
CHAIRPERSON OF DASH RY 21/22
IMMEDIATE PAST PRESIDENT OF RC DAMANSARA

We are pleased to report herewith the activities and projects undertaken by our
District Action Group on Spina Bifida and Hydrocephalus (DASH) with our partners the
Spina Bifida Association of Malaysia since June 2021.
The Global Grant initiative is underway and our panel & doctors and supporting
personnel have been busy sending their presentations to be used as part of the training
of trainers modules being developed. We hope to move forward early next year with
the planned workshops. We have also engaged with our sister clubs in District 3100
and an active group has been formed in Johor and Sabah thanks to the efforts of our
newest DASH member Mr Kovind .

Several events are showcased herewith. Our other joint activities with Sibiam continue to impact SB lives and it is clear why
this initiative is so relevant. Our active SiBIAM members continue to share their inspirational perspectives of live and we
have several highlights included in this issue. The monthly webinar series continues to be well received but we need to get
more rotarians involved for a better outreach. We have been considering celebrating the IF international SB& H day which is
celebrated annually on 25th October for some years now. Thanks to Dr Amara's efforts through Sibiam we were able to do
just that this year and what a lovely event this was. See details enclosed. We hope to make this an annual celebration from
now on. Finally I was heartened by the news that at this very trying times Sibiam received a donation of RM 50,000 from B
Braun a German conglomerate, in recognition of the great work being done by our partners for the SB community.

01 | JULY - DEC 2021

GLOBAL GRANT OFFCIAL LAUNCH: 31st
JULY 2021

We are pleased to inform that the Global Grant (GG1980839) Launch which was held on
Saturday 31st January 2021 on the subject “TRAINING HEALTH CARE PROFESSIONALS
& SPECIAL NEEDS TEACHERS ON THE MANAGEMENT OF SPINA BIFIDA” was an event
with a difference!!

Sibiam's focus amongst others is to create awareness about spina bifida at various levels
especially amongst SB families, SB adults and the community. But with limited resources
this has always been a challenge. With the availability of the Global grant, thanks to the
key driver Dr Kribanandan Gurusamy along with the joint efforts of Sibiam & DASH
members ,we can now work towards creating sustainability in knowledge sharing through
quality training and education programmes for Health Care Professionals and Educators
in Multidisciplinary SB care and management .

The Global Grant launch brought together a diverse group of people and organisations
with the aim to assist this initiative. Dr Kriban G N set the stage by covering the history of
the RCD journey in this area of service, starting with the link up with the Spina Bifida
Association of Malaysia (SiBIAM) in 2010 and the formation of the District Action Group
on Spina Bifida and Hydrocephalus (DASH) in 2019, That was followed by an illustrative
presentation by Prof (Dr) Amara Naicker- Naysaduray President of SiBIAM about the SB
condition and health complications. The ensuing personal testimonies from the SB
community by En Rozaidi Bin Ramlee, K. Aveena Devi, Pang Pei Yee, Mr Harmes
Singh,Tengku Ari Bachtiladien and Dr Yang Mee Eng on the challenges, tribulations and
personnel triumphs moved and inspired everyone present .

The outcome of the meeting has been beautifully illustrated graphically in 3 segments, as
below ie

* Making the Connections and the Next Steps
* Living with Spina Bifida and
* The role of Partners in the SB Journey

See the next page!

02 | JULY - DEC 2021

Global Grant Launch Illustrations

Making the connections and
the next steps

Living with Spina Bifida

The role of Partners in the SB
Journey

The event was well supported by Past District Governor (PDG) Leslie Salehuddin of
Rotary District 3300 steered the event as MC without a hitch and in a masterly manner.
District Governor (DG) Dato Bindi Rajasegaran of Rotary District 3300 who was with us
for the whole event gave a very meaningful speech and effectively connected the dots
before officially declaring the Launch of the Global Grant. Director General Elect (DGE)
Dr Krishna Kumar of Rotary District 3300 ended the event with a very poignant closing
address. We had dignitaries from Rotary District s D3310 (Singapore, Sabah & Sarawak),
D3340 (Jakarta, Indonesia) and D3232 (Chennai, India) including a message of support
from Dr Sylvia Roozen of the International Federation of Spina Bifida and
Hydrocephalus (IFBSH).

03 | JULY - DEC 2021

Global Grant Launch Contributors

04 | JULY - DEC 2021

TESTIMONIALS

05 | JULY - DEC 2021

TESTIMONIALS

06 | JULY - DEC 2021

Webinar series by the Healthcare & Education

The objective of the live health webinars was to discuss the various issues related to spina bifida and
available treatments, therapies, medical interventions, diet etc for the well being of persons with SB. Sibiam's
Health Care Professionals committed to bring the necessary information to its members, families and public
in general.
For the July webinar, we had Dr Brenda Saria Yuliawiratman, Consultant Rehabilitation Physician,
Rehabilitation Medicine Unit Department of Orthopaedics & Traumatology, from Hospital Canselor Tuanku
Muhriz UKM. She spoke on the topic: NEUROGENIC BOWEL MANAGEMENT IN SPINA BIFIDA PATIENTS
together with Pn. Nur Aini Binti Salamat, who is pharmacist and a SB person herself. More than 60
participated and benefited from her talk. This was followed by another webinar on the topic
"REHABILITATION MANAGEMENT IN SPINA BIFIDA" on the 21st Aug 2021 by Dr Aishah Ahmad Fauzi,
Senior Lecturer, Rehabilitation Physician Department of Rehabilitation Medicine, University of Malaya
Medical Centre. We had about 50 participants who attended this talk live from Facebook and zoom.
The Q&A session was interactive and there were some interesting questions posted to the panelists. The
session was moderated by Dr Chan Yean Koon. It is noted that this was the 8th webinar from where we
started in Feb 2021. The team will continue working to produce more webinars on themes related to SB care
and management for SB person and families in the future.

07 | JULY - DEC 2021

End Year Webinars from the Healthcare &
Education team







October 23, 2021

Psychological issues in Spina Bifida - Clinical Child Psychologist,

Dr Yang Wai wai




November 20, 2021

Nutrition for Children with Spina Bifida – Dietician and Clinical Instructor at

IMU, Ms Charmaine Lavinia Alphonso




December 18, 2021

Pressure Injury in Spina Bifida - Rehabilitation Physician, Tengku Ampuan

Afzan Hospital Kuantan, Pahang




08 | JULY - DEC 2021

The Importance of Activities of Daily Living in

Spina Bifida Children

By Nur Khalilatul Amla Kamal Subki, Senior Occupational
Therapist, Assistance Rehabilitation Manager, Sunway Medical
Centre.

Introduction

Living with children with spina bifida is very challenging especially for them to become
independent later in life. Hence, care givers should encourage and help the child to acquire skills
in becoming independent since their early childhood. The most common obstruction to
becoming independent is due to motor dysfunctions and executive dysfunction. In order to help,
they need rehabilitation, and the family should be supported and provided with few coping
strategies.
To elaborate, Occupational Therapy (OT) is one of the rehabilitation professions that can help
all parents or caregivers of children with disabilities. It focuses on self-care activities, improving
fine motor coordination, particularly in the upper extremities. Unlike physiotherapy which
focuses on muscle strength and range of motion of joint, OT focuses on activities of daily living
(ADLs) to build independent living.

Basic ADLs (BADLs) or Personal ADLs (PADLs) include eating, dressing, bathing,

grooming, toileting, and transferring (ie, moving between surfaces such as the bed, chair,


and bathtub or shower).
Instrumental ADLs (IADLs) require more complex cognitive functioning than BADLs. IADLs include

preparing meals; communicating by telephone, writing, or computer; managing finances and daily

drug regimens; cleaning; doing laundry, food shopping, and other errands; traveling as a pedestrian or

by public transportation; and driving. Driving is particularly complex, requiring integration of visual,

physical, and cognitive tasks. Both PADL / BADL or IADL functioning is an importance need for a

person to participate in their life and to achieve their quality of life.

Occupational Assessment and Intervention Program
The OT will assess and individualize the needs of the child. After that, a plan/intervention will be
formulated for the parent/caregiver, and the progress will be monitored throughout for the targeted
goal. It normally includes: -

1)ADL / IADL retraining within person context /temporal need
2)Exposure on play skill (as a child occupation)
3)School participation and performance
4)Assistive devices and technology needed
5)Coping strategies for caregiver / parent
Most care givers are not aware of the importance of child participation in PADL/ADL and IADL
functioning. They do not understand the need for a good quality life among spina bifida survivors.
Hence, the most immediate attention is for care givers to seek for early intervention strategies to
help a child to become independent in life.

Full article click: https://sibiam.my/the-importance-of-activities-of-daily-living-in-spina-bifida-children/

09 | JULY - DEC 2021

Neurogenic Bowel Management in Spina Bifida

Patients.

By Dr Brenda Saria Yuliawiratman, Rehabilitation
Medicine Unit ,PPUKM

Introduction
Children with nerve problems to their lower spine will have abnormal bowel function, which is
referred to as “neurogenic bowel”. Almost all children with spina bifida have abnormal bowel
and bladder functions from infancy. Faecal incontinence is an important factor in the
deterioration of the mental and emotional aspects of quality of life.

Physiology of neurogenic bowel
The neurogenic bowel is a lack of or disruption of nerve innervation due to interruption in the
brain and/or spinal cord. Interruption of the spinal cord occurs in spina bifida. Nerves on the
spinal cord that control the bowel function are at the sacral level (S1-S2). The majority of
children with spina bifida will have lesions that occur at or above the S2 level. Essentially every
person with spina bifida will have some degree of bowel dysfunction. The major problems of
neurogenic bowel are constipation and stool incontinence. This happens for the following
reasons:
·Lack of awareness that the rectum is filled with stool
·Slow motility due to poor innervations from the spine.
·Inability to effectively empty their bowel completely.

Bowel Program
Bowel program is a program of planned interventions to
achieve bowel evacuation at a specific frequency to
maintain bowel continence. Ideally, bowel program
should begin at birth and the child has achieved
continence by school entry. Bowel program is very
challenging and should be managed together with a team
of healthcare professionals who are experts in the
management of neurogenic bowel in spina bifida persons.
Goals of a bowel program include avoiding faecal
incontinence, minimizing/avoiding constipation,
achieving a regular, predictable emptying of bowel at a
socially acceptable time and place, and maintaining short
and long-term gastrointestinal health.

Visit our website for the full article
https://sibiam.my/neurogenic-bowel-management-in-
spina-bifida-patients/

10 | JULY - DEC 2021

Pandemic Assistance by Sibiam-DASH-Rotary

While the Covid-19 pandemic threatens all members of society, it has considerable
impacts on persons who are differently able including our SB members with their
pre-existing medical conditions. The combination of limited access to health
services and social issues arising from financial burdens due to long lockdowns has
resulted in many challenges in supporting their medical needs such as diapers,
feeding tubes or even groceries for the family.
Sibiam always looks out for the members who need our support be it medical
advice, social interaction to share their problem or financial assistance. We are
happy that we have helped the following SB children and families in these stressing
times. Our sincere thanks to Rotary Club of Damansara for the timely assistance.

Ahmad Benjamin was given 240pcs of feeding tubes
Muhammad Hariz Amsyar was given 2 months milk and diapers supply

Aaisyah Ramadhina was given 2 months milk and groceries supply

11 | JULY - DEC 2021

More Team members

Dr Chan Yean Koon

Dr Chan Yean Koon is a Rehabilitation Physician, currently
based in Kota Bharu, Kelantan. She was a government scholar
and graduated from University of Southampton. She
completed her training in Rehabilitation Medicine in
University of Malaya, which included one month in Texas
Children’s Hospital for her elective in pediatric rehabilitation.

Dr Chua Li-Shun

Dr Chua Li-Shun is a Rehabilitation Medicine Physician
currently serving in the Ministry of Health, Malaysia.
She is passionate about outreach and advocacy as part
of her role as a physician. She also hopes to bring
rehabilitation into the community so it is more
accessible to all.

Dr Aishah Binti Ahmad Fauzi

Dr. Aishah binti Ahmad Fauzi is a Rehabilitation Physician at
University Malaya Medical Centre (UMMC). She has more than 8
years of experience in Rehabilitation Medicine practice and has special
interests in paediatric rehabilitati on as well as spinal cord injury
rehabilitation. She graduated from the University of Malaya with her
Bachelor of Medicine and Surgery (MBBS) in 2003 and Master of R
ehabilitation Medicine in 2012. She had her housemanship in Kuala
Lumpur General Hospital and completed it at Hospit al Tuanku
Ampuan Rahimah Klang.

She joined University Malaya as a trainee lecturer, pursued Masters in Rehabilitatio n Medicine in 2008 and
graduated from Masters in 2012 as Rehabilitation Physician and serves UMMC untill now as well as Senior
Lecturer under the Faculty of Medicine, University of Malaya. In 2017, she received a travel fellowship pr
ogram in Rehabilitation Medicine by the Korean Academy of Rehabilitation Medicine (KARM), where she
gained more expe rt training in Paediatric Rehabilitation.

12 | JULY - DEC 2021

More Team members

Yong Kha Ern

Ms. Yong Kha Ern is a final year medical student from
International Medical University (IMU). She will be
joining the Ministry of Health as a houseman in the
coming year.
While studying at medical school, she has always been
active in participating in extracurricular activities. She
considers herself fortunate to be given a chance to
join Sibiam as an intern. As a Resource Person she
believes this new work experience can improve her
communication skills, broaden her exposure, widen
connections and most importantly gain more insight
into family and community issues that differently
abled patients face.

Dr Fong Chi Xiang

Dr Fong Chi Xiang is a junior doctor who is currently
serving in the Ministry Of Health Malaysia. He is full
of passion and dedicated to helping others in need.
The idea of taking care of others truly makes him feel
that he serves a purpose, not only to better his life
but the life of others. As an enthusiastic individual
and a volunteer with an interest in child health, he
wishes to deliver the best care to children.

13 | JULY - DEC 2021

Events from IFSBH and Sibiam

The World Spina Bifida and Hydrocephalus Day 2021 (#WSBHD21) was officilly celebrated on October 25, with the
theme of “Unlock Your Right to Health”. The right to health in accordance with article 25 of the UNCRPD is a high
priority for IF and the global SBH community. Access to timely diagnosis, information, treatment and
multidisciplinary care is still unattainable for many in the SBH community. With stigma, discrimination and lack of
awareness creating further barriers to the enjoyment of the highest attainable standard of health. For this special
day, IF launched a social media toolkit which provided key information, such as events, social media posts, key
messages, links, hashtags, posters, logos and visuals. See the Sibiam.my for a full summary of the event locally and
check out the summary below.
Join IF in unlocking the right to health!
https://www.ifglobal.org/wp-content/uploads/2021/08/WSBHD2021-Toolkit.pdf<https://www.ifglobal.org/wp-
content/uploads/2021/08/WSBHD2021-Toolkit.pdf>;

Sibiam's Participation at IFSBH side event

Presented by Tengku
Ari, Sibiam's

committee member

14 | JULY - DEC 2021

WSBHD Celebration with Sibiam-DASH-Rotary

SIBIAM aims to improve the life chances of the patients through practical and meaningful projects. We
work towards helping people with Spina Bifida realize an active, meaningful and independent life as
members of the community through our planned projects, and programs, such as: patients/home visits,
conferences, campaigns, family days, and etc.

Our vision is to become a one stop solutions provider for Spina Bifida patients, family members
and friends, through which we can provide an avenue for open communications among members.
This is also a platform for the patients and their loved ones to obtain relevant information on
disease management. Lastly, we want to be in a position to organize more and also support
activities related to Spina Bifida. As part of our initiative to create awareness and bringing more
inclusion, diversity and equality to differently able people, this year we organised an event
“World Spina Bifida and Hydrocephalus Day” which was celebrated on the 25th October 2021
worldwide to cherish their talents and ability. The actual programme was held on the 30th
October 2021, [email protected] via zoom platform, Kuala Lumpur, by Sibiam Malaysia

15 | JULY - DEC 2021

WSBHD Celebration Highlights

Local celebration for WSBHD from
Sibiam on the 30th Oct 2021

We have Talents !!!

WSBHD Group photo

WSBHD Committee photo

16 | JULY - DEC 2021

WSBHD Celebration Highlights

Congratulations to all the winners
You have Talents !!!

Thank you to
Chief Guest Dato'Yasmin Yusuff
Organising Committee members
Contestants -SB Adults and Children

DASH
Rotary club of Damansara
Members of Spina Bifida Association of Malaysia

Public



17 | JULY - DEC 2021

WSBHD Celebration article

ASPINA BIFIDA WARRIORS SHOWCASE THEIR TALENTS
Malaysian virtual event marks World Spina Bifida
and Hydrocephalus Day 2021

The World Spina Bifida and Hydrocephalus Day (WSBHD), has been celebrated annually on 25 October, under
the auspices of the International Federation of Spina Bifida and Hydrocephalus (IF) since 2011.
Spina Bifida Association of Malaysia (SIBIAM), with the support of The District Action Group for Spina Bifida and
Hydrocephalus (DASH), celebrated WSBHD 2021 via a virtual local event recently with guest of honour Dato’
Yasmin Yusuff, celebrity radio personality, artiste and former Miss Malaysia Universe .
Yasmin shared her personal connection with individuals with disabilities. “Causes for children with special needs
have always been very close to my heart,” she said.“It has been eye-opening to learn about spina bifida and
hydrocephalus (SBH), especially the visible as well as the invisible disabilities associated with the condition.
Thank you for being an advocate for all who are present today,” said Yasmin, before launching the WSBHD 2021
celebration.

The highlight of the event was a talent competition titled “Celebrate Abilities with Diversity” which showcased
the wide range of talents within the Malaysian SBH community. Winners from each category (6-12 years old, 13-
17 years old and over 18 years old) were decided through a voting process based on Facebook “likes”. Winners
were surprised with a unique immersive view experience via Zoom, where they had virtual photographs taken
live with Yasmin.

Nur Airish Hani Binti Roszaidi, 10, clinched the first prize of RM500 for her category with an impressive drawing

of the Malaysian National Monument alongside the spina bifida ribbon. Meanwhile, Form 4 student Jonathan
朋 友Lee Jing Yik came out victorious among the teens with his rendition of the popular Chinese song “
”

(Friendship). Audio engineer Kenneth D’Cruz, 33, wowed his way to the top of the over 18 years old category

with a heartfelt cover of Rascal Flatt’s “Bless The Broken Road”, for which he also played backing keyboards.

The SBH community consists of many talented people and a wonderful support network that strives to achieve
the best quality of life for all. The commitment to recognise their strengths and ensure accessibility to resources
requires a collective effort. Professor Dr Amaramalar Selvi Naicker-Naysaduray, president of SIBIAM elaborate,
“Individuals with spina bifida need a holistic management; not just from the hospital, but family and friends,
policies that support their needs and accessibility, opportunities for education and jobs, and non-governmental
organisations that can focus on their cause. “With families, healthcare workers and SIBIAM working together, it
is very likely they will have a good quality of life.”
In 2018, DASH was set up as a special action group within Rotary District 3300 and has been instrumental in
advancing SIBIAM’s cause.

Dr Kribanandan GN, chairperson of DASH, explains, “We wanted to bring together like-minded Rotarians to
assist SBH individuals through awareness campaigns leveraging on 2 critical factors: SIBIAM’s excellent network
of doctors and practitioners and the strong structure of clubs within the Rotary Movement.”

18 | JULY - DEC 2021

Donation from B.Braun Medical Supplies to
SiBIAM

We greatly appreciate B.Braun Medical Supplies Sdn Bhd for their
RM50,000.00 donation to SiBIAM to help with our children with Spina
Bifida. Prof Dr. Amaramalar Selvi Naicker, President of SiBIAM, and Ir Dr.
Kribanandan GN, Chairman of DASH received the donation from Mr.
Yeong Lih Chyun (Managing Director). Also present was Sibiam member,
Mohd Ihsan Bin Abdul Karim with his family and the members of the Exco
Team of BMS from left to right, Mr Wong Liang Min, Mr David Koay, Mr
Yeong Lih Chyung and Mr Sing Min Xai.
The Donation is part of the B.Braun Asia Pacific Virtual Charity Run, which
aims to help disadvantaged children in the region.

19 | JULY - DEC 2021

District Action Group on Spina Bifida and
Hydrocephalus (DASH) Committee

RY 2020-21

SECRETARY CO-CHAIRPERSON CHAIRPERSON
PAG SUSAN JOSEPH PAG DR SELVA KUMAR PRESIDENT

IR DR KRIBAN G N

PP DR SHAN NARAYANAN TREASURER ADVISOR
PAG PREEMJIT KAUR GILL PGD LESLIE SALEHUDDIN

PAG DR BERNARD CHAN PP ALEX ABRAHAM KOVIND VIGNESWARRAN

PE LT CDR SHANDRA RTN DR WILKINSON TAN PRESIDENT
DR JANET FOO

PROF DR AMARAMALAR DR POONGKODI DR YUSMA AZNI LERK YUNG ANG
SELVI NAICKER NAGAPPAN

21 | JULY - DEC 2021

JULY - SEPT 2021

GET IN TOUCH WITH US

Contact:
DASH/Sibiam at 012-690 3390
or c/o JTK Consult at 03-7710 3799

Facebook: District Action Group on
Spina Bifida and Hydrocephalus /
Spina Bifida Malayisa

Website: www.sibiam.my

For this issue:
Editor: Ir Dr Kribanandan G N
Contributors: Dr Brenda Saria Yuliawiratman, Puan Khalilatul Amla,
En Roszaidi Bin Ramlee, K. Aveena Devi, Harmesh Singh and Pang
Pei Yee
Compilation done by: Ms Mahes Varatharaj




22 | JULY - DEC 2021