Amaramalar Selvi Naicker, president of Spina Bifida & Hydrocephalus Society of Malaysia (SIBIAM), relates how the upcoming conference on Spinal Bifida & Hydrocephalus (SBH) will help raise awareness about the condition, and improve outcomes for affected individuals and their families globally
How did SIBIAM secure the bid to host the 30th International Conference on Spinal Bifida & Hydrocephalus? What key strategies and partnerships were instrumental in the win?
Since 2018, SIBIAM has been conducting awareness programmes, seminars and workshops in several states in Malaysia in collaboration with Rotarians, healthcare professionals, and Spina Bifida and Hydrocephalus (SBH) families.
In 2021, SIBIAM partnered with the Rotary Club Damansara to bid for the Rotary Global grant, funding from which enabled SIBIAM to carry out awareness and education programmes involving 1,200 individuals across seven states over two years.
Our activities have demonstrated SIBIAM’s organisational capacity to host successful events, including planning, managing logistics, coordinating with local and international partners, and fundraising. This success motivated us to bid for the 30th International Conference on Spina Bifida & Hydrocephalus 2024 when the International Federation for Spina Bifida and Hydrocephalus announced it in 2023.
We developed a comprehensive proposal highlighting why the Spina Bifida & Hydrocephalus Association of Malaysia is capable of hosting this prestigious event, showcasing our collaboration with healthcare professionals, SBH individuals and families, and Rotarians.
Our proposal included details about Klang Valley’s accessibility, cultural attractions, and local support for the conference. The bidding team comprised SIBIAM committee members, long-term volunteer healthcare professionals, and Medical Conference Partners, a PCO experienced in managing large-scale conferences.
The proposal also detailed the financial aspects of hosting the conference and included commitments of support and letters of endorsement from various stakeholders, such as healthcare professionals, Rotarians, government officials, advocacy groups, and corporate companies. These endorsements strengthened our bid.
Please tell us more about the conference.
Malaysia will have the honour of being the first country in South-east Asia to host the 30th International Conference on Spina Bifida & Hydrocephalus. It will be held at Avante Hotel in Petaling Jaya from October 24-26, 2024, coinciding with World Spina Bifida Day on October 25.
The event will focus on the latest medical advances and scientific findings, aiming to support and benefit the SBH community. Unlike most medical conferences that emphasise knowledge sharing solely among healthcare professionals and scientists, this conference is tailored to also include SBH individuals, their caregivers, families, and advocates.
As such, the conference will have healthcare and scientific tracks, alongside consumer sessions, workshops, and forums related to healthcare, multidisciplinary management strategies, human rights, and SBH prevention.
The three-day event will culminate in a grand fundraising gala dinner, themed An Evening of Stars and Strides. In addition to a gastronomic experience, there will be inspiring speeches, cultural performances, and a talent show by SBH individuals from various countries, including Malaysia. The SBH Global Lifetime Achievement Award for an outstanding SBH individual, and the SBH Global Healthcare Professional Hero Award to honour dedicated healthcare professionals, will also be given out.
Funds raised will support SIBIAM’s community-focused activities.
How will you ensure inclusivity at the conference, ensuring that the perspectives and experiences of individuals with spina bifida and hydrocephalus are well-represented?
We will actively seek out speakers and panellists who have lived experiences with SBH to ensure their perspectives are represented. Healthcare experts with extensive experience in SBH care will also be involved.
For participants aged 18 and older, the convention provides opportunities to learn about global SBH communities, stay updated on medical care and rehabilitation advancements, attend workshops on independent living skills, and attend workshops on vocational training. Host city tours will also be made available.
Attendees between ages 13 and 17 can engage in technology exploration, attend workshops on skills and hobbies, and connect with both Malaysian and international SBH peers. Children below the age of 12 have the chance to participate in play-based learning led by occupational therapists and physiotherapists, and engage in educational activities.
The venue is fully wheelchair accessible, with ramps, elevators, accessible restrooms, changing rooms, and a good number of wheelchair-accessible rooms. Volunteers will be available around the clock to assist and support attendees.
We have engaged with advocacy groups and organisations representing SBH globally to ensure their communities are aware of and encouraged to participate in the conference.
What strategies are being employed to maximise the impact of the conference on raising awareness about SBH, both within Malaysia and on a broader international scale?
To maximise the impact of the conference on raising awareness about SBH, we are partnering with healthcare professionals, advocacy groups, government agencies, policymakers, and SBH communities to ensure a broad and influential audience.
We will also invite renowned experts and advocates worldwide to share insights and experiences, attracting a global audience and fostering cross-cultural exchange.
There is also a collaboration with Rotary Club Damansara, the District Action Group for Spina Bifida and Hydrocephalus, and Medical Conference Partners to seek partnerships for enhanced outreach, funding, and support
Post-conference, we will sustain momentum by publishing proceedings, and disseminating key findings.
How do you envision the conference contributing to the society’s long-term goals and objectives in terms of research, advocacy, and support for affected individuals and their families?
I envision the conference as a vital platform to align our society’s long-term goals and objectives. These include raising awareness within the local SBH community and encouraging the involvement of healthcare professionals, stakeholders, and the wider community to improve the future for those affected by this condition. We aim to provide robust support and advocacy for impacted individuals and their families.
Through discussions with the Health Ministry, we intend to assist in setting up a registry of individuals affected by SBH and related disorders. A centralised database will help in planning healthcare and rehabilitation needs, developing care guidelines, and fostering research initiatives.
These efforts can contribute to scientific knowledge and pave the way for innovations in prevention, such as awareness, education, and food fortification, improved birth outcomes through advanced foetal surgeries and related procedures, and enhanced functional outcomes through appropriate rehabilitation devices and robotics. Additionally, we aim to focus on the quality of life for the ageing SBH community.
