• The SMAllest act of love makes the biggest difference. Join us!

    Together, we can commit to driving the change needed for a brighter future and embark on a caring journey.

    Sunday, 2 December, 2018
    Plaza Arkadia, Desa ParkCity
    7.30AM - 10.00AM

    Early Bird Registration

    RM50/pax
    (adult/child) until 15 Oct
  • Letter To Minister Of Health: “SMA – Making HOPE real for the families”

    On Dec 23, 2016, the US Food and Drug Administration approved the first-ever drug therapy for spinal muscular atrophy or SMA, called Spinraza (Nusinersen). Since then, the SMA community in Malaysia has watched as country after country approves the use of this drug, bringing heartening joy to the SMA families there.

  • Do you know? 1 in 50 carry the defective SMA gene.

    SMA is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants.

STORIES

02 Jul 2018
We are encouraged that rare diseases are included in “Promise 9: Improve access to and quality of health services”, paving the way towards full equal opportunities for access to healthcare for families with SMA and rare diseases. We look forward to the Harapan government committing towards ‘Making Our Hope Real’
16 Oct 2017
After having a battery of tests done, the doctor finally breaks the news. Your child/family member has Spinal Muscular Atrophy.
10 Apr 2018
The siblings of a rare disease patients ( here are SMA patients) are extraordinary. They are the "silent heroes" who are the true fighters" in this journey.
29 Oct 2017
Branden Lim was testing out a prototype wheelchair when Malaysiakini arrived at his home in Damansara Jaya for an interview.
28 Feb 2018
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.
18 Mar 2018
Yao Wen is a happy, positive and brilliant boy. However, he is not able to go to school in the last few years.
08 Mar 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?
20 Apr 2018
He faces difficult challenges, but his attitude makes growing up with Branden and SMA meaningful, inspiring and happy.

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EVENTS

02 Dec 2018
Desa ParkCity
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!
26 Jan 2018
Kidzania, KL
Are you a family with children with disabilities? Would you like to visit Kidzania KL on Friday 26 Jan 2018 from 9.30am to 1pm?
21 Jan 2018
English Champ, PJ
A sharing session facilitated by Ms Sook Yee, a mother of a child with a life limiting genetic disorder (SMA)
31 Dec 2017
Desa ParkCity
Come join us at “SMAll Wheelathon Charity Ride" ♿🚴🏃🛴🏂 to make a BIG difference.

OUR SOCIAL MEDIA

OUR SOCIAL MEDIA

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