Blog
Building a Resilient Family in the COVID-19 Pandemic
Introduction We are just starting out with COVID-19, it is a marathon and not a sprint. It is something that we will have to endure for another 1-3 years and perhaps longer. The Covid-19 pandemic has significantly impacted all of society. Most of us are struggling with many different emotions and uncertainties. We have a deep sense of loss of the present realities we had taken for granted and the future hopes we have dreamed of. This is especially true
Beyond Law’s Boundaries, Transcending Law’s Disabilities
The following was presented by James Low Hong Ping at a forum organised by the Kuala Lumpur Bar Committee Gender Equality and Diversity Committee on 15 October 2018. The forum was titled “Reaching Beyond Boundaries: Transcending Disability.” James Low is currently a part time tutor of Constitutional Law at Faculty of Law, University of Malaya. He was formerly a committee member of WeCareJourney and has SMA Type 2. “We are not the problem. We have problems as much
Battles Fought with Lots of Love
SPINAL muscular atrophy (SMA) is a rare disease that used to lead to no other outcome but premature death. And before that death, children would suffer dreadful deterioration of the ability to move, eat and breathe. In a majority of cases, that traumatic end used to come before two years of age; SMA was known as a major cause of the death of babies under that age. However, with advancements in science and medicine, the outcome for SMA patients has
A Malaysian In Florida Series
I didn’t know how to start off this series so let’s start from the beginning. After having a battery of tests done, the doctor finally breaks the news. Your child/family member has Spinal Muscular Atrophy. ” “Huh? What’s that? Never heard of this before”. ” “But this “never heard of before” disease will change your child’s and the life of your family forever. So you sit there while the doctor explains to you what the disease is. You sit there,
11th Annual International Experience Exchange with Patient Organisations (IEEPO)
Previous Next I was extremely surprised, thrilled and thankful to be invited to attend the 11th Annual International Experience Exchange with Patient Organisations. This conference was my first introduction to personalised healthcare and got to understand its transformative impact on the way healthcare is delivered and why it should matter for patient groups. I learnt also on the shift in patient participation in healthcare, where patients can be true collaborators with pharma, holding the key to unlocking the full potential