Hooray for the FDA!

Thank God the FDA will soon have the best possible commissioner that it could have found–Peggy Hamburg! I was expecting it, but my delight is something akin to the glee I felt when Obama was elected on Nov. 4. I know that is saying a lot, but perhaps many people don’t know how very broken FDA is and how in need of excellence that agency has grown.

Margaret Hamburg brings that excellence. She has the most diverse resume of any physician in Washington, and perhaps in this country with all of the jobs she has held and all her many accomplishments. On top of it all, she is a Mom and certainly the Chief Medical Officer of her household–someone who can relate to the fears and concerns of parents both in food and drug safety, as well as in many of FDA other responsbilities, such as the need to encourage clinical trials in pediatric populations, to broaden the availablility of pain medication to chronic pain sufferers, and much more.

I really look forward to her administration of this agency. Now, I only wish it were a cabinet post!

The Curious Case of Benjamin Button and the reality of rapid aging

 

 

In the Movie, starring Brad Pitt, called the Curious Case of Benjamin Button a person is born old and slowly ages backwards. The movie was a moving story and received a record number of Academy Award nominations. Near the end of his life, Benjamin Button looked like a little child, but he was an old man.

 

In fact there is a real disease, called Progeria, in which little children are born, looking like regular, healthy babies, and they rapidly age. By the time they are four years old, they have the body of a seventy-year old. They suffer all the physical signs of aging including losing their hair, heart disease, arthritis, breathing problems and much, much more. Interestingly, few if any of them have dementia or Alzheimer’s disease.

 

Today someone asked me why the FaceBook Cause I, along with another children’s health advocate, also named Audrey, created has 868 members—which is more members than there are children with the disease. The answer is obvious, regular people are easier to find and easier to recruit to a cause like one of rapid aging in children than are actual kids with the disease who have never been diagnosed. HOWEVER, the whole purpose of the Cause is to identify additional kids around the globe with this condition.

 

To do this, we need a lot more than 868 members or even 3,000 members. We need our members to support the Progeria Research Cause with their dollars and to use their networking skills to reach out to parts of the globe, when they travel and when they correspond with people via all the new media devices, to say “Hey, do you know a child that looks like this child—the one on the Progeria Cause page on FaceBook and do you know if that child has ever been to a specialist in childhood genetic disorders do that she or he can be counted and given the proper treatment for their aging?”

 

You can do this. Start by going to our Cause page at the following address and donate to the Cause. On the donate tab the minimum amount is $10.00, but you surely give that. Unfortunately the FaceBook causes will not allow a smaller donation. If all 816 people did this, we could go a long way toward reaching our fundraising goals and also in recruiting new members, who just might be in a little village somewhere in Italy or Africa where they will notice a child who looks like a child they saw on FaceBook. You CAN make a difference and I hope you will pause right now and try.