A couple of years back, the ice bucket challenge was a social-media sensation, raising an estimated $115 million for research into amyotrophic lateral sclerosis, or Lou Gehrig’s disease.

Not all such ailments receive that kind of visibility — or promotion. Friedreich’s ataxia, a little-known, progressive, fatal neuromuscular disease, has no cure; most heartless of all, its onset usually occurs in young children, who are unlikely to reach the age of 30.

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