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Showing posts from February, 2011

More King George III

On that same note about King George III, we had another recent occurrence. that gave the APF and porphyria more publicity. Recently, the movie, The King's Speech, was the story of one of the heirs of King George who became King after his brother abdicated, "for the woman he loved." He was the grandfather of the present Queen Elizabeth. Remember that story!!!

Several years ago , producers of the movie called us regarding the porphyria connection to the royal family. The King has a stammer, so they wanted to know if pophyria was a cause. I told them this was another family issue.

Regardless, they gave the APF credit in the movie credits. Which reminds me, we have had more television exposure than any other rare disease. If you watch HOUSE, you will have seen porphyria featured many times. To illustrate , here is a list of shows below, as well as two movies:
MOVIES
*The Madness of King George (1994) & (2005) Movie
* The King's Speech ( 2010) Movie

TELEVI…

King George III and Porphyria and You

Since our last blog mentioned that one way to gain media attention is to enlighten them on the significance of Porphyria and the Revolutionary War. Namely, King George III, often known as Mad King George, was the reigning king of Great Britian and Ireland from 1760-1820. The APF has a letter signed “GR” to the Lord Chancellor, Kew, Feb. 23rd 1789 and is the one single document in English history in which medical and political history are joined. It is difficult to imagine a more important autograph letter marking a happier occasion in George III’s life-long battle with the illness that entirely unjustly, saddled him with the epithet “Mad King George.”

George III was born in 1738, first son of Frederick, Prince of Wales and Augusta. He married his beloved wife, Charlotte of Mecklinburg-Strelitz in 1761. The couple produced a prolific fifteen children: nine sons and six daughters. George III succeeded his grandfather, George II, in 1760 and became one of the longest ruling Monarch o…

There was Fun, Too!!!

I wanted to include in the materials we were developing for doctors and patients the issues that were key to patients. So I interviewed many of them and asked them their thoughts on the subject. I would like to take a moment to share with you a few special patients who were in the Rockefeller Research program with me.

Herta was another extraordinary Porphyria patient at Rockefeller. When Herta arrived at the hospital, everyone knew it. She walked down the halls with a bigger than life personality. Everyone was a friend. Herta was vivacious, smart, interesting and had such a commanding presence that she drew instantaneous attention. I liked her and her husband, Herman, from the moment we met. Unfortunately, Herta was also very sick with Porphyria at times and often had to visit the outpatient clinic at the hospital.

Herman drove Herta into the city from New Jersey for her appointments. Since he was making the round-trip to and from the city, he took on the job of bringing ur…

The APF and You.

When the two of us decided to move forward to start an American Porphyria Foundaiton, we first discussed the fact that without a group of experts behind us, we would have absolutely no validation. Fortunately, we knew some of the porphyria experts in the country, so we began contacting them to discover the others.

We set the parameters to determine what consitiutes an expert and we decided on certain parameters. the following were a few of the parameters:

They wrote the medical text book chapters on poprhyria.

They did the porphyria research.

They already had a reputation in the medical world as the "pophyria experts."

They attened the national and international porhyria conferences .

They were known by their european counterparts as porphyria experts.

They had publications in the most prestigious medical journals, like New England Journal of Medicine.

They were known as porphyria experts amoung their peers.

They had many porphyria patients a…