Friday, June 14, 2024

It’s Time Dr. Francis Collins Be Named Director of The National Institutes of Health

June 3, 2009 by  
Filed under Opinion


News agencies over the past month have reported that Dr. Francis S. Collins, the scientist who led the U.S. government drive to map the 3 billion letters of the human genetic code, is the leading contender to run the National Institutes of Health.  Where is the announcement we are all desperately waiting for?  God, what is the hold-up?

President Obama, if you want to overhaul our healthcare system like you say you do please give this critical healthcare post to Dr. Collins.  Dr. Collins understands that we can accelerate research by understanding our genetic code and how genetics influence our health and our lives.

Dr. Collins understands that studying genes that cause horrible rare diseases will aid in our understand the most common illnesses impacting millions.  For example, if you want to understand “obesity,” researchers need to understand how the Niemann Pick Type C gene on Chromosome 18 works.  The NPC gene regulates human cholesterol metabolism and has been recently linked to obesity and many other diseases that are affecting millions yet very little money at NIH goes into research in this critical cholesterol gene.

The focus at NIH needs to shift to the 23 pairs of chromosomes and the 20,000 genes that make us human and to understanding rare diseases.  We need Dr. Collins to continue to provide his revolutionary contributions to genetic research and continue to bring his intellectual and spiritual perspective to people everywhere.   I am not a scientist but I am a believer.   A believer in Dr. Francis Collins!

President Obama, Please Meet Addi and Cassi To Understand Why Your Jay Leno Joke Is No Laughing Matter

March 21, 2009 by  
Filed under Opinion, Rare Disease

Mediports Addi and Cassi Cyclodextrin Infusions

President Obama’s Special Olympics joke on Jay Leno may not seem like a big deal to some Americans but for others the gaffe is disappointing. Our twins, Addi and Cassi, are afflicted with a rare and fatal cholesterol disease called Niemann Pick Type C and they are considered “special needs.” We have all made mistakes with words or put our foot in our mouth from time to time. President Obama is human too and must be forgiven by the special needs community for his off hand joke. Of all people, our President understands what it’s like to live in a society where stereotypes abound and hopefully he will turn this negative situation into a positive.

What’s frustrating to me is that all special needs children seem to get lumped into one category — “retarded” (a word that should be forever removed from our vocabulary). Children with Ataxia-Telangiectasia are born healthy but completely lose their entire motor coordination control center in the cerebellum.  Their minds remain intact but they progress to wheelchairs and often die in their teens. Someone on the street would think a child with A-T is intellectually challenged when they are not. Many children who fit into the special needs category have life threatening and debilitating diseases like Addi and Cassi – they are called Rare Diseases.

Millions of people, primarily children, are afflicted with Rare Diseases that are often genetic in origin. President Obama needs to educate himself quickly and learn what it truly means to be special in America.  He will then learn to laugh with us and not at us. More importantly, President Obama can not only help us overcome stereotypes but he can invest in much needed medical research that can keep our special kids alive.

ReThink IT Video: A Story About Alzheimer’s

June 3, 2008 by  
Filed under Opinion, Videos

An Alzheimer’s video I made for the 2008 election.