Skip to main content

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 and not just a few .

With these very strict parameters in place, we were easily able to identify THE EXPERTS. They were an elite group and were amazingly knowledgeable about the porphyrias . Our next step was to contact them and arrange a meeting. This was not easy as they were spread across the country and we ha no funds to bring them together. So we investigated where the next medical meeting would be held that many of them would attend. Chicago was the place. The onew who were already attending were not a problem. Those doctors who were not attending the convention paid their own way.

The plan we devised that day turned out better than we could have imagined. Our first step was to invite a group of prominent Porphyria experts to gather in Chicago to discuss our objectives and to solicit their input and participation. We both agreed that the effectiveness of our future foundation was dependent upon the caliber of the physicians/researchers involved and the quality and reliability of the educational materials we would produce. The name we chose for the new foundation would be The American Porphyria Foundation.

The financial burden of starting such a foundation was on us, including gathering the names and support of Porphyria specialists around the country to start the plan of action. This would be a very costly but necessary endeavor. Fortuitously, the Digestive Disease Week convention was scheduled to convene in Chicago shortly after James and I started planning our mini-conference. Digestive Disease Week is the major convention for gastroenterologists, liver specialists and other related medical specialties, which meant that most of the Porphyria specialists who were involved with the acute Porphyrias would be in attendance. This was not only a huge financial break for us; it also saved us from the logistical quandary of trying to bring doctors from different coasts to one location.

We quickly contacted the list of specialists, introduced ourselves and invited them to join us to discuss our dream of an American Porphyria Foundation. They all accepted. At the time, I did not know the rigors of a medical convention, so I wasn’t sensitive to the great sacrifice of time and energy that the experts shared with us.

Our meeting was held in one of Chicago’s lakeside high-rises. The view was spectacular, which added to the ambiance of our first meeting with a group of strangers. James knew one of the specialists very well, but, like me, he never had met most of the other attendees. The Porphyria specialists were a wonderfully congenial group of men and women. When we presented our plan to start the American Porphyria Foundation, each of them was very receptive to the idea and agreed to be members of our scientific advisory board. Almost thirty years later, they continue to volunteer their time and expertise, a contribution not often duplicated in other educational or medical foundations.

Before I proceeed, I want to add here that this has been the way our experts have been for the next thirty years. They have volunteered their time , etc. This is why I am so bothered when I see commments about our board of experts making money out of porphyria or getting money from a drug company....... that is so ludicrious. No one makes money on a rare disease. They have consulted with thousands of doctors over the past thirty years and have never changed one red cent.....not one penny. So those people who ae saying differently are not only ill informed, i my book, they should be ashamed. You see we need to be appreciative of this group of doctors who are so caring and who have volunteered their time for 30 years. to enhance that thought, one of the original experts, donated the major funding for the APF to move forward.

To continue, when we met with Dr.s Anderson, Bissell, Bloomer, Desnick, Pierach, Pimstone, Shedlofsky, Tishler, Kushner, Bonkovsky and Sassa ( who has since died). they were glad that we wanted to start a foundation and heartily agreed to serve on our Scientific Advisory Board.

This gave us the impetus to continue. If your are seeking information from any group or organization, if they do not have experts at the forefront, then it might be best to find another information source.

With this group, we developed educational materials and even got names of patients from the experts and NIH. Unfortunately , however, shortly after we started the APF, NIH stopped their porphyria research program and the government almost completely stopped their funding of rare disease research. That brought important research to an almost stop. This was severely disappointing.

Until recently, for over 25 years, research funding was very difficult, if not impossible, to find. You can imagine how I felt and how hard it was for the porphyria researchers. Nonetheless, we pressed onward and upward. We grew each year and instituted major patient and physician educational programs. WE knew both were of ultimate importance. As many of you havc experienced, most doctors have NEVER had a porphyria patient and did not know how to diagnose and treat each of the porphyrias.

Therefore, we have put as much emphasis on the doctors educational program as the patient education program knowing that unless patients are diagnosed and treated properly,we are still at square one. We feel the same way today , so the APF makes these educational programs a very important funding priority.

How you can help us is to send in your doctor's name and address and we will send him or her a very comprehensive packet of info all written by pophyria experts and we will put the doctors on the database to keep them updated. We also attend targeted medical conventions like , The Liver meeting, where 8000 doctors attend to learn the latest in liver disease. You can volunteer to help man our APF exhibit booth and distribute our brochures etc to the attendees. What an opportunity to make a difference. So check the APF news letters and E-NEWS to find out when these conferences will take place.


Popular posts from this blog

Amazing patient advocacy....and needed media for this issue. Thank you Terri Witter!


The APF asked our Facebook friends for their top questions they would ask a porphyria expert.
 The following questions were submitted to Dr. Wang for his responses ... Q. Does EPP give us bad teeth? Also, do people with EPP get stomach pains or is that with the other porphyias? A. The porphyrin that accumulates in EPP patients is protoporphyrin IX, which does not cause discoloration to teeth or abdominal pain.
 The type of porphyria that leads to discolored teeth is Congenital Erythropoietic Protoporphyria. The porphyrias that lead to episodic abdominal pain attacks are the acute hepatic porphyrias. Q. I have EPP and I have a severe reaction on my hands and lips. Do I seek urgent care? Also, what can you even do when you burn your lips? A. The acute reactions to sunlight in EPP can be very severe and, unfortunately, there are not many effective options to treat the symptoms. Nonsteroidal anti-inflammatory drugs (NSAIDS such as ibup…