What Dying Kids Can Teach Our Government About Health Care Reform
Here is a video we put together for Oprah last year about the issues we are facing with health care and drug development system in the United States and what happens when your children are dying from a rare and fatal cholesterol disease like Niemann-Pick Type C (NPC). This video was made when our twins Addi and Cassi could still talk and sing — they have lost this ability due to “Childhood Alzheimer’s.” I hope everyone in government will watch this video and look at our website to understand why the entire health care process is broken, especially drug development. Would someone please forward my video and website to Nancy Pelosi, Harry Reid, Arlen Specter, Kathleen Sebelius, President Barak Obama and others.
Rare diseases that afflict children like the cholesterol disease Niemann Pick Type C could lead to treatments and cures for millions of people. When will anyone pay attention? Maybe this year Oprah will consider covering Addi and Cassi since the cyclodextrin we are giving Addi and Cassi not only might save them from this deadly cholesterol disease but all kills the HIV-AIDS virus!!