Our
Support for Parents & Families
We provide these programs and services:
support for families affected by SMA
Our programs provide tangible support for families affected by SMA, easing the difficulties of an SMA diagnosis, and showing each family that they are not alone and that there is hope.
family support programs
The foundation of our family support programs is our outreach. We’re committed to making sure that these families and all our families have the best, most accurate information about SMA and what it means for them, from day-to-day care to the changing landscape of research breakthroughs.
provide equipment pool and service support
Individuals affected by SMA need specialized care and equipment, which can put enormous financial pressure on families. WeCareJourney makes sure families understand all the options and resources available to them, and our equipment pool and service support gives families access to specialized items and education.
Download PDF
SMA Care Pack
In English, Bahasa Malaysia and Chinese
Latest Consensus Statement of Care Part 1
Diagnosis, Rehabilitation, Orthopedic & Nutritional care (English only)
Latest Consensus Statement of Care Part 2
Pulmonary & Acute Care; Medications, Supplements & Immunizations;
Other Organ Systems; and Ethics (English only)