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TheStar – One Step Forward By Ministry Of Health For SMA Patients
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
The Star – Can we share some money to save some lives
With Budget 2020 looming around the corner, perhaps some of our tax dollars can be shared to save the lives of those born with rare disorders. PARLIAMENT has resumed once more, and we know that this means that Budget 2020 is around the corner – especially considering that it’s now October. I am sure that many of us will be looking forward to Budget Day to see what subsidies, tax breaks and other ‘goodies’ will be announced to make our
SMALL Wheelathon 2018
The first SMALL Wheelathon Charity Ride at Desa ParkCity was a blast! Thanks to everyone who showed up and made a BIG difference. WeCareJourney is bringing SMALL WHEELATHON II to you and your family & friends, on Sunday 2 Dec 2018, in conjunction to International Day of Person with Disabilities. Come join us again for SMALL Wheelathon II this year! Together, we will: create awareness for Spinal Muscular Atrophy (SMA) have a fun INCLUSIVE event with families and friends to work out together for better health So,
SMA Registry
What is the SMA Registry?The SMA Registry is a database set up to collect, store, retrieve, analyze, and share information on individuals—both children and adults—diagnosed with spinal muscular atrophy (“SMA”). In this current phase, data shall be obtained directly from patients and families.What is the purpose?By providing a view of the people affected by SMA in Malaysia, to follow the progress over time and track and document the prevalence and progression of SMA, we can provide information that is valuable
SMA on Rare Disease Day on AFO LIVE
https://youtu.be/91pStV0w92Y February 28th is Rare Disease Day and it aims to raise awareness with policy makers and the public of rare diseases and their impact on the lives of patients, the families and caregivers. One of the Rare Diseases around is Spinal Muscular Atrophy. Spinal muscular atrophy (SMA) is a genetic disease affecting the part of the nervous system that controls voluntary musclemovement. … SMA involves the loss of nerve cells called motor neurons in the spinal cord
SMA AWARENESS MONTH
Hey, do you know that August is declared as SMA Awareness Month worldwide? As this month is special to us, we would like to share many facts and relevant information about SMA to spread awareness and increase public’s knowledge on SMA and our community. Stay tune to find out more. Keep updated on our campaign to make sure you don’t miss anything. You can help us make an impact by sharing our post and donate to help SMA families. Your