The heart of what we do here at Global Genes is to connect. With small patient populations for each of these 7,000 diseases–it can be hard to make change, generate support and raise funds. For years now, we’ve followed families and their foundations. We’ve watched incredible awareness efforts and have felt the warmth and ties from the patient community through our own Patient Advocacy Summit.
Earlier this summer we lost Gwendolyn Strong of the Gwendolyn Strong Foundation for Spinal Muscular Atrophy. Her mother, Victoria, wrote a compelling and heart wrenching note on her grief. Through the family’s efforts they’ve made extraordinary strides in funding research and awareness.
But maybe most importantly, the were able to provide their daughter with an extraordinary life and created a legacy of hope to live long after she had left.
Please consider continuing to support Gwendolyn and all that she and her family were able to bring to the Spinal Muscular Atrophy and rare disease community.