Support

Coordination of the resources available to families is extremely lacking in the current health care system. From our experience, proactive family or caregiver support through the entire post-diagnosis process is critical to providing families with the tools and resources necessary to cope with the overwhelming reality of their newfound, life-altering situation.

SMA is a cruel, degenerative disease that requires around-the-clock medical assistance and monitoring. Just as we were coming to terms with the reality of Gwendolyn’s diagnosis, her day-to-day medical needs, and our new role as primary caregivers within that process, we were frustrated by the lack of proactive support from within and outside of the medical community. There was limited or murky guidance with respect to what resources we would need, what resources were available to us, and how to go about obtaining those resources. And we know this is true for any family with a life-altering diagnosis. Resources – government, national, and local – exist, and they exist in abundance, but there is no coordinated, proactive program in place to help families and caregivers obtain them. At such a critical, overwhelming time, the need couldn’t be more important.

GSF will create and support programs focused on helping those impacted by life-altering diseases through their critical post-diagnosis journey.