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Thursday, May 28 2015

Full Issue

Patients, Family Members Turn Into Entrepreneurs, Activists

The Washington Post writes about the challenges of a man with early-onset dementia who has become an advocate for greater government support for research into Alzheimer's disease, and also about a woman who invented a clothing line for people who struggle with fine motor skills like her husband.

When Michael Ellenbogen calls for a more aggressive fight against Alzheimer鈥檚 disease, he speaks with passion that comes from experience. As someone who was diagnosed with early-onset dementia, Ellenbogen can convey firsthand the pain and frustration at what he sees as insufficient government support for research to find a cure or better treatments. But to some, Ellenbogen鈥檚 passion recently went too far. ... Ellenbogen, a former telecommunications manager, is one of a small but growing number of people with Alzheimer鈥檚 disease who are shaking off the stigma of the neurodegenerative illness to become public advocates in the campaign for a cure. But his experience shows the unusual challenges people with dementia sometimes face in the public arena. (Kunkle, 5/27)

Maura Horton has always been her husband鈥檚 cheerleader. ... But after Don was diagnosed with Parkinson鈥檚 disease, a chronic and progressive movement disorder, in his 40鈥檚 and Maura found herself feeling helpless in the face of his degenerative disease鈥檚 affects. So she has stepped into a new role鈥攐ne that she never imagined for herself: Founder and CEO of MagnaReady, which makes adaptive clothing for people who struggle with fine motor skills. People like her husband. (Tenety, 5/28)

This is part of the Morning Briefing, a summary of health policy coverage from major news organizations. Sign up for an email subscription.
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