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Who is SMA Care?
SMAcare.org delivers relevant information to enable families with spinal muscular atrophy (SMA) to achieve better health in their lives.
Through trusted comprehensive medical content, insights from experts and real families, and useful toolkits, we aim to answer: what is SMA and the impact on families; how to prevent, diagnose and treat SMA effectively and early; and why it matters to solve unmet needs and provide optimal care and support.
About Us
Our Vision
We aim to empower everyone to make a positive impact to healthcare for SMA by:
Delivering trusted and comprehensive guidance for healthcare providers and families with SMA.
Delivering pertinent information to the general public.
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Contact us for further understanding of SMA.
Toolkits
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SMA is an inherited genetic disease. It occurs when a child inherits two mutated copies of the survival motor neuron 1 (SMN1) gene, one from each parent (autosomal recessive inheritance).
Below are the various expenses related to the management of spinal muscular atrophy (SMA), which can greatly strain a family’s finances.
In this study, the foremost issue was the lack of independence and mobility. In particular, this was a critical milestone for patients with SMA type 3 as they transitioned from being independently mobile to becoming wheelchair-bound. On the other hand, wheelchairs are a part of life for those with SMA type 2, who are usually adept at utilising powered or electric wheelchairs. However, all face difficulty travelling independently or navigating their environment due to sub-optimal infrastructure and public amenities that are inaccessible to wheelchairs.
There is need for a support system at each stage of SMA as many parents have painfully shared the mental torment, anger, stress, depression and anxiety they go through at each stage of the disease. This includes dealing with the shock and grief that comes with the diagnosis and prognosis, the mental burdens of caring for their child and the grief when the child passes away.