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The Foundation of the APF.

I want to tell you about the people who are the FOUNDATION of the APF. JJ My life and yours would have or could have had a tragic ending without the hard work of the people I have written about in the following paragraphs. There are so many other scientists, physicians and lab technicians that have enhanced our lives and improved our health but there is not room enough on the pages of this book to name them all and to enumerate their achievements. Know that they are in laboratories, hospitals and research centers all over the world and that without them, to be sure, your life would be filled with more sickness or pain.

You can support them first with your prayers. They are the most powerful and least used force in the universe. Next, you have the opportunity to support them with your finances. There are plenty of research projects that will change the Porphyria world but they need money to be completed. The APF has separate accounts for research projects. You can donate funds that will go specifically to those projects by noting your request in a letter. You can take joy in knowing that your participation by praying and funding one of these projects has lessened the suffering of Porphyria patients throughout the world and that you have helped the following individuals and those not listed to accomplish their life-changing goals. You can make donations by credit card or check.

Our first Chairman of the Scientific Advisory Board was Dr. Karl Anderson, who is board certified in both Internal Medicine and Gastroenterology, an ideal combination for the acute Porphyrias. He was at Rockefeller University when I met him and first became his patient. A few years later, Dr. Anderson left Rockefeller to become the Director of the Porphyria Center, the Director of the Division of Human Nutrition in the Department of Preventive Medicine and Community Health and the Associate Director of the General Clinical Research Center (GCRC) at the University of Texas Medical Branch in Galveston, Texas. In that capacity, he developed the GCRC's training curriculum in clinical investigation, including developing the course Methods in Clinical Investigation. Dr. Anderson’s research focused on the effects of diet on drug and hormone metabolism, the human Porphyrias and drug metabolism in cirrhosis.

His Porphyria-specific studies include treating the acute Porphyrias with heme arginate, GnRH analogues and erythropoietin, as well as studying the roles of vitamin C and hepatitis C in PCT. Recently he began researching the effect of an enzyme replacement for the Porphyrias, which is manufactured by Hemebiotech, a company based in Denmark. Dr. Anderson co-chaired an advisory panel of experts for the APF, which was established to enhance awareness of the Porphyrias among primary care physicians and to help them improve diagnosis and treatment of the disease.

He has been my doctor for over twenty years. I can hardly speak or write about him without becoming emotional. Even though we have also become friends and colleagues for twenty years, I continue to call him Dr. Anderson rather than Karl. For me, I call him Doctor, because it is a revered title and the most outwardly respectful thing I can do. To be a doctor is a high calling. It involves healing, a God-given ministry and that is what I feel about Dr. Anderson. He is a ministering physician, an instrument of God; the kind of man about whom the Lord can say, “Well done, my good and faithful servant.”

It would take another entire book to describe Dr. Anderson’s many kindnesses to patients all over this country and other parts of the world. In fact, I can say the same about all of our board members. They all have served the Porphyria patient community with very little compensation.
Dr. Anderson is also one of the physicians who are training future experts . To enlighten you on this very important program:

At the formation of the American Porphyria Foundation in 1980, the founders sought the most renowned porphyria experts in the country to serve on the Scientific Advisory Board. These individuals were identified and selected on the basis of their training, experience, peer-reviewed publications, research, attendance at international meetings and knowledge as experts among other physicians in the field of metabolic diseases. These have provided expert advice to the Foundation and its members continuously over many years.

Members of the Scientific Advisory Board of the American Porphyria Foundation are medical pioneers in the field of porphyria and have led porphyria research, testing and treatment for the past thirty years. This prestigious group of porphyria specialists are currently diagnosing and treating patients, as well as acting as consultants to their primary care physicians. These experts also developed the medical publications in the American Porphyria Foundation brochures, website, newsletters and E-news updates.

In addition, these experts have published the major medical texts and journal articles related to porphyria, including the well received article, “Recommendations for the Diagnosis and Treatment of the Acute Porphyrias,” published in the March 2005 issue of the Annals of Internal Medicine. The American Porphyria Foundation has received over one thousand requests for copies of this particular article.

Over the past few years, such publications have dramatically increased the level of porphyria diagnosis, which, in turn, increased the need for expert consultation, medical publications and educational programs among primary care physicians. These newly diagnosed porphyria patients and their treating physicians rely on the American Porphyria Foundation and the board of specialists for the best available approaches to diagnose and treat porphyria.

Most of the present porphyria experts received their training through government funding. However, because of budget cuts, all rare diseases had little access to the type of government funding that was available in times past. Since porphyria is categorized as a rare disease, the funding opportunities and financial incentives to enter the field are few. These and other financial restraints on medical funding will in the future create a potentially disastrous situation for patients and their primary physicians as the number of present experts decreases and the funding to train their replacements is very limited.

The American Porphyria Foundation is acutely concerned about the evolving scarcity of porphyria specialists. Therefore, in December 2004, the American Porphyria Foundation established the “Protect The Future” educational program to attract and train the next generation of porphyria specialists. Our “Protect The Future” program is a major means of expanding the present group of porphyria experts and practitioners while preventing a future lack of experts to serve the Foundation and its members on the Scientific Advisory Board.

At present, the APF has supported the training of ten experts via the PTF program. Most of the PTF doctors are on their way to Cardiff to attend the International Porphyria Meeting where experts gather from around the world to share their expertise and research projects.

*Dr. Anderson is co chair the Consortium of researchers

It is an exiting time!!!!


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