O C T O B E R T O D E C E M B E R 2 0 2 0 beyond the cord NEWSLETTER
INDEX Foreword Page 1 0 0 | O C T O B E R - D E C E M B E R 2 0 2 0 DASH Operational Approach Page 3 International Federation of Spina Bifida and Hydrocephalus Page 4 World Spina Bifida and Hydrocephalus Day Page 4 Interesting Talks by our Panel of Professionals Page 5 SiBIAM's 13th Annual General Meeting Page 6 What's new in Sibiam 2020-2022 committee Page 7 Donations by SiBIAM Page 8 Possible KPJ Collaboration Page 9 Community Assessment and Global Grant application Page 11 District Grant Application Page 10 About us: DASH Page 2 Factual Fiction Page 15 Christmas Greetings Page 16 Get in touch with us Page 18
0 1 | O C T O B E R - D E C E M B E R 2 0 2 0 Quite a bit has happened since the inauguration of our Action Group. Before we could say DASH, our second quarterly issue of Beyond the Cord is about to be circulated. Congratulations to the editorial team on the inaugural issue and many more to come. Am delighted that the Global grant has been approved which is a major milestone and achievement for a fledgling Action Group. To date the only other Action group is DAGA having had two Global Grants approved. The Grant will surely inject much needed funds in achieving one of the objective of DASH and in working with SIBIAM. But what is so unique is that DASH has co opted non-Rotarian medical professionals who are SB champions such as Prof Dr Amara, Dr Poongkodi and Dr Yusma. This is indeed a trailblazer which should be emulated by the other DAGs. FOREWORD PDG Leslie Salehuddin ADVISOR TO DASH, DRFC RY 18-21 Kudos to Dr Kriban and RC Damansara as well as the other local and international partner clubs and Districts and a big thank you to DG Teoh and the Grants Committee for the support and also to DRFC PP Dr Shahul for his invaluable advice and DDF support, DRFC PDG Eva for her strong financial support and PAG Susan for her hands on guidance. Getting the Grant is a load off the chest but the exciting journey has just begun. Dr Krib, Dr Selva and Dr Janet have been sharing and engaging clubs nationwide with their virtual talks on SB in educating Rotarians what the affliction is all about and the way forward with DASH. Dr Janet had also organised a visit to the Cheras Rehab Centre. It was quite a packed few months for a group in its infancy despite the ‘new norm’. In signing off, as we wind down a tumultuous and unforgettable 2020 I extend Season’s Greetings to all and hoping 2021 will be a brighter year ahead. 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 during this quarter. It is with a great sense of achievement that we announce the confirmation of the Global Grant which was approved in record time within a month of submission on 15th November 2020. This was a culmination of several years of our involvement in the Spina Bifida Initiative, which has been a personal journey for me and was only possible with the keen support of the Spina Bifida Association of Malaysia and in particular Prof Dr Amara Selvi Naicker the president of the organization. As I write this forward, we have all the pledges for the funds of US$ 45,814 in place and we hope to kick start the project in the first quarter of 2021 depending on the situation on the ground with Covid-19. The details of the Global grant is given herewith. Ir Dr Kribanandan G N CHAIRPERSON OF DASH RY19/20 & 20/21 & PRESIDENT OF RC DAMANSARA 20/21 I would also like to take this opportunity to thank our partner clubs for having organised several joint meetings to raise awareness about SB & H. These events are showcased herewith and such events go a long way to highlighting the SB condition and why this initiative is needed and why it is so relevant. Considering how debilitating this condition can be and knowing that prevention of a significant number of cases is possible via dietary supplementation and life style changes, this is a logical service of interest for Rotarians. We look forward to taking the message district wide in the coming months with the support of our vibrant rotary clubs. Moving forward The National agenda on supplementation of our food with folic acid also requires champaigns.
O C T O B E R T O D E C E M B E R 2 0 2 0 0 2 | O C T O B E R - D E C E M B E R 2 0 2 0 Connecting Rotary and the Spina Bifida Community Our mission is to provide support in the areas of advocacy, resources, and activities to the Spina Bifida community while promoting awareness and acceptance, to maximize the potential and quality of life of persons with Spina Bifida and their families. DASH The District Action Group on Spina Bifida & Hydrocephalus, Rotary Club District 3300 Above: DASH and Sibiam Committee Members with Doctors and other HCP at the 'Educate to Elevate" seminar in Sungai Petani, Nov 2019
0 3 | O C T O B E R - D E C E M B E R 2 0 2 0 THE DASH Operational Approach The District Action Group of Spina Bifida & Hydrocephalus (DASH) is not set up as an independent organization but as a body to stimulate interest in SB&H and promote projects which can be jointly undertaken by Rotary clubs and other interested organisations. The Rotary club of Damansara has taken a lead on this matter and it is the aim of DASH to extend this work through the other Rotary clubs in the district and always working closely with the national SB & H organisation SIBIAM to progress awareness, Education, and Engagement. All funds raised for these activities will be parked either in a Rotary Club account or the SIBIAM account for works to be executed jointly. The Global Grant will be managed by RCD and DASH can work with other clubs and SIBIAM if specific funds are available for SB projects. We have a great need to support the SB families particularly as the pandemic in 2020 has had devastating effects all around. We look forward to working with partner clubs to take forward this SB&H agenda
World Spina Bifida and Hydrocephalus Day The First Online Event 2020 25 October 2020 Five Eminent speakers were involved in the panel. Vice President of Sibiam, Dr Kriban provided an insighful sharing of the journey and achievements of Sibiam in Malaysia Over 100 participants attended from all over the world and there was an interesting question & answer session which followed. 0 4 | O C T O B E R - D E C E M B E R 2 0 2 0 The International Federation for Spina Bifida and Hydrocephalus (IF) is a global network representing people with Spina Bifida and Hydrocephalus (SBH) and their families. Founded in 1979, it is now a professional organisation represented on all continents, with unique and expert knowledge of SBH, treatment and care, prevention measures and the human rights & right to health of people with SBH throughout the lifespan. The mission of IF is to improve the quality of life of people w/ SBH & their families, & reduce incidence of neural tube defects by improving maternal health literacy; by raising awareness, political advocacy, research, community building & human rights education.
0 5 | O C T O B E R - D E C E M B E R 2 0 2 0 This was an informative and lively talk attended by over 30 persons. We had an active Q & A session and excellent sharing by Dr Kriban which lasted over an hour. There were some interesting and informative questions that were raised during the session. We highlight herewith two questions which could have been dealt with in more detail. Q: How do we know if the unborn child has Spina Bifida? A: There are multiple tests that can be done prenatally to confirm the diagnosis of Spina Bifida in a fetus. The first method is by testing the levels of maternal serum alpha-fetoprotein. A significant level of this protein present in the mother's blood is associated with increased risk of a Spina Bifida child. Another test called Amniocentesis can be performed at an early stage of pregnancy whereby samples of the amniotic fluid is taken out and assessed. An ultrasound scan can also be carried out during the second trimester to rule out the presence of such anomalies. Q: What could be the reason behind the low incidence of SB in the Chinese population? A: Up to this point, no in depth research has been done to prove that the Chinese population has a lower risk of Spina Bifida. However, what we do know is that nutritional deficiencies such as Folate deficiency, strong family history of Spina Bifida, medications, diabeties, and obesity can all increase risk factors associated with Spina Bifida. Interesting talks by our panel of professionals
0 6 | O C T O B E R - D E C E M B E R 2 0 2 0 SIBIAM’S 13th AGM ON 31st OCTOBER 2020 Newly Elected SiBIAM Committee Members 2020/2021 President Vice President Secretary General Assistant Secretary Treasurer Assistant Treasure Comittee Members Internal Auditor External Auditor Prof Dr Amara Naicker Ir Dr Kribanandan GN Nazri bin Mohamed Rasdi Harmesh Singh Francis A/L Aluranandam Edward Poh Seng Aik Nur Khalilatul Amia Khairul Aizat Tengku Ari Mdm Chin Steven Gan Eng Huat Jyandralal F Kothari
WHATS NEW IN SIBIAM 2020-2022 COMMITTEE 1. Health and Education to be facilitated by Prof Dr Amara and Dr Kriban This committee will be responsible to come up with content for all the activity or programme mainly preparation of training materials that educate and bring awareness on various issues related to SB will help coordinate the Global Grant project. 2. Family and Welfare to be facilitated by Nazri Bin Mohamed Rasdi and Puan Amla This committee will be responsible to keep the connection between the organisation and its members. The committee will identify members, families who need help by doing frequent home visits, phone calls and interactions with the members. 3. Media and Public Image to be facilitated by Harmesh Singh and Edward Poh This committee plays an important role to publicise Sibiam's activities in a timely manner in the social media platform to bring Sibiam to the general public and members itself. They will responsible for disseminating the information to a wider audience and in the process raise awareness. The work with DASH and the Rotary initiative will also be highlighted. 0 7 | O C T O B E R - D E C E M B E R 2 0 2 0 Sub committees were introduced this year by Sibiam to bring more members to come together and be involved. In this way, members would have an opportunity to participate in all Sibiam's activities. The idea behind this establishment was a realisation that more work needs to be done and we would need more manpower, resources, and efforts to make every initiative or project successful. This will also improve the connection between the members and the committee. There are 3 subcommittees which have been identified as follows:
Donations by SiBIAM 33 years old Malay man, single and unemployed who is SB himself was looking for financial assistance. Ihsan is staying with his parents and sister in a low-cost flat. His father is currently unemployed due to his health condition (mild stroke). Whereas his mother was diagnosed with breast cancer and has had a few operations and currently under chemotherapy and radiotherapy. The sister is a full-time caretaker for them, therefore she has not been able to commit to any outside job. The family is highly stressed due to their health and financial conditions. Sibiam donated RM 500 to Mohd Ihsan's family for immediate relief. We hope to continue our donation drive initiative for the family to find assistance for the long term. 0 8 | O C T O B E R - D E C E M B E R 2 0 2 0 By your side always Sponsored lateral support and backrest to Timmy Wang Zhi Seng, Ipoh Perak. Sibiam hopes this timely assistance will ease the family's burden.
0 9 | O C T O B E R - D E C E M B E R 2 0 2 0 Possible KPJ Colaboration : Reaching out to children with Neural Tube Defects Healthcare & Rehabilitation Training & education of therapy staff and nursing staff (hands on course) Collaborate with our panel of rehabilitation specialists to assist with care in centres that don’t have rehab physicians SiBIAM/DASH can provide Provide the therapists and nurses to assist with SB care Run free or subsidised therapy sessions for SB children and adults Provide dedicated spaces to: To hold mini workshops (for training staff) Double up as SiBIAM/DASH office to hold meetings Adopt SiBIAM as part of the regular KPJ / CSR initiatives KPJ to provide Resource Centre - we have the materials Counseling/ advisory services Affordable therapy Set up an Equipment lending library (to collect, refurbish reusable second hand support equipments such as wheelchairs, walking aids, orthotics etc. ) To be able to provide at cost personal care items such as diapers, catheters, dressing materials. (DASH/Sibiam will fundraise to support this) Setting up multiple centers across the nation to provide basic services such as What DASH/SiBIAM need What KPJ has An Extensive Network of branches KPJ has relevant manpower including a network of health care professionals who could become our partners in raising awareness KPJ has the resources to provide physical spaces for some of the identified needs. PRESENTATION TO THE KPJ GROUP 10 DEC 2020
1 0 | O C T O B E R - D E C E M B E R 2 0 2 0 RCD's District Grant Application in favour of the SB families *Selected Beneficiaries Age 0-7 years 8-18 years SB Clients 1 2 3 4 5 6 Requirements Diapers Milk powder Wheelchair Catheters Hygiene Kit Colostomy bags Special Shoes Catheters Walking Frame- Rollator Special Stroller Grand Total Price x Quantitty 1 month Enema 2.5x5 90 3500 x 1 2 x 5 150 8 1400 x 1 2 x 5 1.5 x 3 350 375 90 3500 300 150 240 1400 300 Special Shoes 1400 x 1 1400 18 350 4000 12123 RC Damansara applied for a District Grant for the purchase of much needed items for Spina Bifida patients. A District Grant of RM 8,000.00 was approved by the District. Prior to application for this District Grant a needs assessment was conducted amongst the patients and a list of their needs was ascertained and the cost totalled RM 12,123.00 as shown in the table below. In addition to the RM 8,000.00 obtained from the District Grant, President Kriban and AG Benny Poh have contributed RM 500.00 and RM1000 respectively and the remaining shortfall will be financed by donations from other well wishers. We hope to purchase and handover the required items within the month. Sibiam is actively contacting the beneficiaries to finalise the specific needs and budget.
1 1 | O C T O B E R - D E C E M B E R 2 0 2 0 A community assessment was done in August 2020 in order to better understand the demographics and needs of the Spina Bifida Community. The survey revealed that the majority of the members come from financially challenged backgrounds (B40 and M40 groups). The need for help in the form of education and awareness of their child’s health and funding assistance for medical and rehabilitation devices was clearly demonstrated from the responses. Some of the families also need funding for their day to day needs. Based on SIBIAM’s database and the current responses to the survey, there are approximately 107 active SB members who responded with most of them in the Klang Valley. A smaller percentage of members are from Kuantan, Johor Bahru, and Sungai Petani. These members were drawn in to SIBIAM, following awareness campaigns that were conducted in those areas in the last 3 years. We believe that a larger number of SB individuals are yet to be reached, thus confirming the urgent need to carry out more widespread awareness programs in the various states including Sabah and Sarawak for both healthcare professionals to improve their service delivery to the SB community as well as to educate SB families on the care needs of their children whilst encouraging them to join SIBIAM. This will help not only to centralise data, but also to increase SB visibility when advocating for government and corporate assistance for this special needs group. The global grant project which was recently approved will go some way towards addressing these issues. Community Assessment by Prof Dr Amara
1 2 | O C T O B E R - D E C E M B E R 2 0 2 0 Community Assessment Findings
1 3 | O C T O B E R - D E C E M B E R 2 0 2 0 *Allowed to choose more than 1 option *58 out of 91 responses (63.7% of total responses) have stated that they need financial assistance Allowed to choose more than 1 option *Diapers and catheters are the most indicated followed by special shoes/orthotics.
1 4 | O C T O B E R - D E C E M B E R 2 0 2 0 Global Grant Application Poster
1 5 | O C T O B E R - D E C E M B E R 2 0 2 0 Factual Fiction By Dr Janet Foo
1 6 | O C T O B E R - D E C E M B E R 2 0 2 0 Our 2020 Christmas Greetings
1 7 | O C T O B E R - D E C E M B E R 2 0 2 0 District Action Group on Spina Bifida and Hydrocephalus (DASH) Committee RY 2020-21 ADVISOR PGD LESLIE SALEHUDDIN SECRETARY PP DR SHAN NARAYANAN CO-CHAIRPERSON PAG DR SELVA KUMAR CHAIRPERSON PRESIDENT IR DR KRIBAN G N PAG SUSAN JOSEPH TREASURER PAG DR PREEMJIT KAUR GILL PAG DR BERNARD CHAN PP ALEX ABRAHAM PE LT CDR SHANDRA RTN DR WILKINSON TAN PROF DR AMARAMALAR SELVI NAICKER PRESIDENT DR JANET FOO DR POONGKODI NAGAPPAN DR YUSMA AZNI
O C T O B E R - D E C E M B E R 2 0 2 0 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 1 8 | O C T O B E R - D E C E M B E R 2 0 2 0 For this issue: Editor: Ir Dr Kribanandan G N Contributors: Dr Janet Foo, Dr Shan Narayanan and Dr Amara Naicker, Susan Joseph Compilation done by: Ms Mahes Varatharaj, Dr Wong Xiu Yu GET IN TOUCH WITH US