Were going to be on CNN this month with Dr. Sanjay Gupta -- he has been following our family and the twins for over 4 years. Will keep you posted on the air date. newsonnews/cnni/301014-431 Info. about the show This month, ‘Vital Signs with Dr. Sanjay Gupta’ takes a look at a genetic disease which affects only 500 people worldwide. Addison and Cassidy Hempel were three years old when their parents realised they were slipping away. Up to then, parents Hugh and Chris had been living a charmed life. Their plans were derailed when Addi and Cassi were diagnosed with a condition known as Niemann-Pick Type C, sometimes referred to as Childhood Alzheimers, for the tangled plaques it leaves in the brain. The prognosis: death, probably before the girls would become teenagers. The Hempels knew there was research underway to find a cure, but they also knew it would take decades – time their girls didnt have. What the Hempels did next is astounding. Working virtually on their own, they badgered drug companies, obscure journal publishers, hospitals, government bureaucrats, Fortune 500 Executives and Nobel Prize winners until they had a potential treatment. In the end, they did what big drug companies take decades to do: they found a promising new medicine to help their girls. The Hempels crusade inspired families and doctors around the world to test their discovery and sparked the first-ever FDA trial of a drug to treat NPC. Addi and Cassi have likely suffered permanent damage, but theyve defied the odds to survive and their condition has actually improved. Dr. Gupta has followed the Hempels journey for more than four years. In ‘Vital Signs’ he takes viewers on a tour of the world of rare diseases and cutting-edge research.
Posted on: Sat, 01 Nov 2014 18:52:53 +0000
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