A seed grown from the IBTA World Summit

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melissa

A note from Melissa Lim, President BTSS

Hearing from fellow advocates about the work they have done in their respective countries, during the IBTA First World Summit for Brain Tumour Patient Advocates in San Francisco from 18th to 20th November 2013, truly opened my eyes to the possibilities of what we can do in Singapore for our brain tumour patients and caregivers.

When I shared these insights with my group in January 2014, the members suggested that our group needed to become an official Society in order to undertake some of the plans I had in mind.  This initially seemed like a daunting project for me. In the past ten years as a member of the informal Brain Tumour Support Group (BTSG) in Singapore, I knew that securing consistent attendance at meetings was hard. In addition, although BTSG had met since 2004 on a monthly basis at a hospital venue, we were inadvertently disbanded when this venue was no longer available in 2010.

Without formal leadership and a meeting venue, the closer members of BTSG maintained personal contact to continue supporting each other. Once in a long while, we would have a gathering to reconnect and catch up. We did not have a website or Facebook profile, nor any scheduled meetings or venue. What we had was our Yahoo Group, which mainly broadcasted the IBTA eNews which we have been receiving from Denis Strangman, IBTA Chair and Co-Director, who had

A new chapter begins in Singapore In December 2012, I decided to take up independent leadership of the group and tried to secure venue support from a hospital for BTSG’s meetings to facilitate the 2013 objectives of befriending and patient education.

It was a big morale booster for me when an Assistant Director of Nursing at Singapore General Hospital (SGH) offered a meeting venue at the Neurosurgery Ward. We met in SGH for the first time in July 2013, and were delighted that a couple of nurses from SGH neurosurgery came on board to also support us in the administrative and logistics aspects of our meetings.

In 2013, we held our other three meetings in June, August and September at members’ homes since our group members were familiar to each other and preferred the more homely settings.

Our group reconnected with Denis Strangman during his day trip to Singapore in July 2013, and it was through Denis’ gentle yet persistent persuasion that I agreed to attend the First World Summit of Brain Tumour Patient Advocates (which attracted 64 participants from 20 countries) – a trip that eventually led me to submit an application for the registration of Brain Tumour Society (Singapore) otherwise known as “BTSS” on 28 January 2014.

Through the senior nurses in BTSS, we secured a medical advisory panel for BTSS comprising two respected neurosurgeons and one neuro-oncologist. Meanwhile, two newspaper articles which featured my own brain tumour story and work led several members of the public to our group.