• Building a Resilient Family in the COVID-19 Pandemic

    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 of younger persons and those in training.

    READ more
  • 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.

    Information saves lives. Read, learn and share!

    WeCareJourney would like to thank Instituto Vidas Raras for their great work and allowing us to adapt the Guidelines for local use.

    READ more
  • 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.


  • SMA REGISTRY

    The SMA registry is a database of genetic and clinical information for individuals affected by Spinal Muscular Atrophy (SMA) and/or family members of individuals affected by SMA.

    DISCOVER MORE

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