Blog
Letter To Minister Of Health: “SMA – Making HOPE real for the families”
LETTER | Spinal muscular atrophy (SMA) is a degenerative disease that occurs in about 1 in 11,000 live births which means about one baby is born with SMA almost every week in Malaysia. About 1 in 50 people (globally) are carriers of the defective gene that causes SMA, or about 640,000 Malaysians. SMA is the number one genetic cause of death for infants and affects the motor nerves resulting in muscle wasting and weakness. It is a progressive disease, robbing patients of their
International Women’s Day 2018
WeCareJourney celebrates IWD by asking these 4 ladies who are successful in their own field of work, despite their challenges and medical condition, Spinal Muscular Atrophy. WHAT DOES IWD MEAN TO THEM? They have shown us that with grit and determination, everyone, regardless of gender can achieve their dreams and live life to the fullest. We admire their “quiet strengths” in advocating for equal rights and opportunity. Keep inspiring. These pictures say a thousand words. “In a fight
IKEA Malaysia #ChampionForRare
https://old.wecarejourney.org/wp-content/uploads/2024/08/Testimonial-from-WCJ_Malaysia-2020.mp4 DATE & TIME In Malaysia and across the world, there are numerous types of rare diseases that often go unnoticed and undiagnosed, due to one crucial factor, the lack of awareness. In light of 2020 World #RareDiseaseDay this February, IKEA Malaysia alongside three local NGOs, We Care Journey, MyPOPI and Prader-Willi Syndrome Malaysia (PWSM) are set to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patient’s lives. Building awareness of
How do you choose a caregiver
We know that trusting new caregivers with your baby (or toddler or preschooler) is a big step. We get it. You’re probably feeling all the big feelings right now: worry, guilt, and maybe even relief that you will get the help you deserve. There will be focus throughout this year on mastering letters, sounds, and words. You’ll watch with delight as she takes her first steps toward reading and writing correctly, especially when those activities are linked, both at school
General Guidelines for people with Spinal Muscular Atrophy or SMA and their Caregivers in the Coronavirus pandemic.
In such a difficult time that is unlike anything we have ever lived, simple guidelines are needed. That is why WeCareJourney worked with the Instituto Vidas Raras to launch in Malaysia this booklet of General Guidelines for People with Spinal Muscular Atrophy or SMA and their Caregivers in the Coronavirus Pandemic. We believe it is important to have the expertise professionals, use language that is easy to read and understand, reliable data, and locally relevant content. We thank all the professionals from
Founders, Edmund and Sook Yee
Hello! Please get to know us a little better by watching these short videos. Here on social media Uniqlo sponsored April 2016, and featured here on NTV7 December 2015. Plus this slideshow Growing up with Spinal Muscular Atrophy. We regularly update on our Facebook group Growing Up With Branden and SMA. Not long ago, we also published an article which was featured in The Mighty an online media platform for disability with a 100 million mreaders. Here is it extracted below. “This is the