With arrival of breakthrough therapies, a rare disease group reconsiders the possible — and its mission
What happens once the disease you've been advocating for is no longer really the same disease? What do you do when the years of fundraising and lobbying and research actually…
DALLAS — Inside Kelly Eakin’s garage in suburban Maryland, two of the world’s smallest wheelchairs gather dust.
Just a few years ago, these wheelchairs were in high demand. There was a constant waiting list of eight or nine young children with spinal muscular atrophy, or SMA, a devastating disease that could shorten life and stunt growth so severely many patients couldn’t use the child wheelchairs insurance covered. So the Fighting for Kaiden Foundation, of which Eakin is president, ordered 7-pound ones from a Swedish manufacturer at $6,000 or $7,000 a pop.
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