My daughter is fighting a rare disease. A ‘streamlined’ FDA won’t help her

My daughter is fighting a rare disease. A ‘streamlined’ FDA won’t help her

My 4-year-old daughter, Elle, is in the fight of her life. Her older sister, Milla, lost her fight last November. Their opponent? Batten disease, a rare, fast-moving, and fatal condition that destroys the central nervous system’s ability to function. Elle has a chance to help manage, or maybe even beat, her disease that Milla didn’t have:… (more…)

Don’t write us off: People with dementia press for more rights – and respect

Don’t write us off: People with dementia press for more rights – and respect

Ten months ago, Peter Mittler stood before a global audience of Alzheimer’s disease researchers and advocates and decried the indignities that people with dementia undergo. He knows the subject intimately: Mittler, an 86-year-old British psychologist, was diagnosed with mild Alzheimer’s in 2006. “Everybody thinks that we are just a medical problem,” Mittler told his audience. “People… (more…)