September 2019
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Hotel Panorama, 8A Hart Avenue, TST, Kowloon (Exit N1, TST MTR Station), Hong Kong, Hong Kong
Club Assembly / Rtn Cynthia LAI
Date :  02 September 2019
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12:45
Hotel Panorama, 8A Hart Avenue, TST, Kowloon (Exit N1, TST MTR Station), Hong Kong, Hong Kong
Ms. Shirley HUI / Act Locally, Think Globally
Date :  09 September 2019
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12:45
Hotel Panorama, 8A Hart Avenue, TST, Kowloon (Exit N1, TST MTR Station), Hong Kong, Hong Kong
President Josephine LEUNG / Connect through Art
Date :  16 September 2019
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12:45
Hotel Panorama, 8A Hart Avenue, TST, Kowloon (Exit N1, TST MTR Station), Hong Kong, Hong Kong
Mr. Aswald AU / Property Technology
Date :  23 September 2019
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No Image
12:45
Hotel Panorama, 8A Hart Avenue, TST, Kowloon (Exit N1, TST MTR Station), Hong Kong, Hong Kong
Ms. Margie YEUNG / The Story of Montblanc
Date :  30 September 2019

2016.09.26

General
Date: 26 September 2016 12:30 - 14:00

Place: Hotel Panorama, 8A Hart Avenue, TST, Kowloon (Exit N1, TST MTR Station)

Speaker: Mr. Martin RANDALL
 
Speech Topic: The Story of Kai

Lunch Cost: HKD300

About the Speech:

Kai is a five year old boy with Cerebal Palsy and Epilepsy. He cannot speak and has difficulty walking. When he was born it was thought he was just a baby with bad colic, it was only at 16 months that it was realised that something more serious was going on, when he had his first recognised convulsions.

The doctors could not identify what caused the problem and for the next three years Kai and his mum went through test after test to try and isolate this. Kai was having regular fits, every couple of months needing to be admitted to hospital as they could be life threatening. Each time these occured doctors would ask Kai's mum in great detail for all the factors that had occured in the lead up to the problem, so Kai's mum started to keep copious notes on food and drink consumed along with timing, medication, supplements, mood, external stimuli, the list was seemingly endless and very hard to keep organised as there was also Kai's dad, a carer and doctors and nurses involved in his care.

The situation is compounded because no two children are exactly the same, so in the end Kai's mum became defacto the World's leading expert on Kai. She was reading a lot as she was still trying to identify the cause of his problems and contacting many mums in similar circumstances along the way.

Eventually they signed up for a clinical trial that doctors in HK were running in conjunction with the Netherlands. For the next twelve months they sequenced different parts of Kai's genome until they found a mutated gene that could explain the situation. They tested Kai's parents and found both were carriers, a very rare situation.

Even though they had now found the problem, it did not negate the need to keep tracking all the possible factors that could lead to seizures and other issues, so Kai's mum decided to do something radical about it, to both simplify the tracking and create a legacy for Kai and along the way help thousands of other kids too.

In her quest for knowledge Kai's mum had tried various platforms for tracking the data she needed to keep.... and none of them worked...... so she decided to use her knowledge to create her own. And not just hers, but to tap into her network of some 5000 mums and build something that would work for their kids too.

It's going to be a journey of several stages. We've identifid most of the data we need to collect, the remaining niche areas are close to completion. We've started to identify the easiest ways to collect the various bits of data, looking at monitoring devices, scanning of medicine and supplements and simplicity of data entry for the rest, such that it minimizes the effort and delivers the granularity of information necessary to predict problems in advance.

At this first stage it will let kid's parents examine the data for the clues they need to help their child. They will be able to set realtime alerts for when certain levels of activity or other sets of circumstances occur.

The second stage will be to create a platform where medical professionals are able to have immediate access to the relevant information in the unfortunate situation where something goes wrong.

Stage three will come as the data bank builds and we'll be able to use algorithyms to predict problems for a range of specific conditions and issue realtime alerts to parents who may not yet realise the danger their child is in.

Kai's mum is packaging all this up as an app, available to all. Any money it generates will go into a fund to secure Kai's future.

Kai's mum tears up when she talks about him, so our thought was for me to tell the story, but to have Kai's mum there for the audience to meet. We'll obviously tell more of a story around this basic framework and can show pics and videos.

 

Telephone
+852 90131251
Email
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Address
8A Hart Ave, Tsim Sha Tsui
Hong Kong

 

Map


 

All Dates


  • 26 September 2016 12:30 - 14:00

 

 

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