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Showing posts from August, 2015

Dont Forgot To MOO'VE it

The "MOVE IT IN THE MOONLIGHT RUN" In Burlington, NC on August 28, 2015
The location of the run is now determined: Chick-fil-A University Commons at 1477 University Dr. Burlington, NC 27215 Please register and join the awareness run. It was organized at night so that people with photosensitive porphyrias can participate too. You can find out more details and information about the run on the website:

"Remember....Research is the key to your cure!"

Bent Rods Bass Club Fundraising & The Barrel Race in Vernon, TX

Bent Rods Bass Club Fundraising We invite you to the Bent Rods Bass Club for the fundraising tournament. Bent Rods Bass Club strongly believes in giving back and in the Karma of helping others, so each year they pick a new Charity to support. For 2015 they have picked the APF.  For fundraising event they will be hosting the Bent "mini" Rods Challenge and raffling off a custom built bait casting rod & reel. Please watch the video: Bent "mini" Rods Challenge Location:  Deep Lake, Lake Villa, IL.  Jack & Lydia's Resort. Entry Fees: $20 per angler. If you want to help us give back and buy a raffle ticket for the custom rod, contact the treasurer: Bent Rods Bass Club Fundraising
The Barrel Race in Vernon, TX We also would like to remind you about the upcoming undertaking from the Cook family. As you may know, the Cook brothers, Cason and Caul, have EPP and have set a great example about enhancing awareness of the disease in their local area. They…

From NIH- A must Read

From NIH  A Must READ
Porphyria Porphyrias are a group of rare disorders passed down through families. An important part ofhemoglobin, called heme, is not made properly. Heme is also found in myoglobin, a protein found in certain muscles. Causes Normally, the body makes heme in a multi-step process. Porphyrins are made during several steps of this process. Patients with porphyria are lacking certain enzymes needed for this process. This causes abnormal amounts of porphyrins or related chemicals to build up in the body. There are many different forms of porphyria. The most common type is porphyria cutanea tarda (PCT). Drugs, infection, alcohol, and hormones such as estrogen may trigger attacks of certain types of porphyria. Symptoms Porphyrias involve three major symptoms: Abdominal pain or cramping (only in some forms of the disease)

Flash back from the New England Journal 1960 read and share

*The second annual Chester M. Jones Lecture, presented in part at the Massachusetts General Hospital, Boston, March 18, 1960. From the Department of Medicine, University of Minnesota Medical School and Hospitals. Aided by the John and Mary Briggs Fund for Porphyria Research, and under a contract with the Research and Development Command, Surgeon General's Office, United States Army.
This was provided by the New England Journal good to read and keep

Genetics 101: Basic genetics and inheritance of Porphyria

Genetics 101:  Basic genetics and inheritance In order to better understand the Porphyrias and how the disorders are inherited, it is helpful to understand some concepts of basic genetics and inheritance patterns. DNA, Chromosomes, and Genes:Deoxyribonucleic acid (DNA) is a nucleic acid that contains the instructions used in the development and functioning of all known living organisms and some viruses. DNA is often compared to a set of blueprints or a recipe or a code because it contains the instructions needed to make certain proteins, which are the complex molecules that do most of the work in our bodies. Each of these proteins has a specific function in the cell, and, ultimately in how the organism develops, its physical makeup, and how it functions day-to-day. The DNA segments that carry this genetic information are called genes. The size of each gene varies greatly, and there are about 20,000 genes that are distributed along the 23 pairs of chromosomes. A DNA molecule is a twist…

A Note from Dr Peter Tishler Office

Hello dear members, we have an open letter from Dr. Peter Tishler to share with you.
To: Individuals with Acute Porphyrias, who are Members of American Porphyria Foundation Subject: Communication to us the benefits of your medications
Dear Folks, I have established the American Porphyria Foundation Drug Database, for you all to consult for drug safety (or not) when you are prescribed a new medication. I received information from many of you several years ago, and added lots of your information to the Drug Database. I write you now to ask you to report me the names and results of any drugs you have been taking since the beginning of 2013, so that I can compare your report with the Drug Database and hopefully add new information (OK! or BAD!) to the Database. Please complete the attached table and send it to the American Porphyria Foundation at 4900 Woodway Dr. Ste 780, Houston, TX 77056, or copy this table and send it back to us via Email. Many thanks!

Medication Name Date Started Stopped Probl…

BPA shares: 8 ways to better sleep

8 ways to better sleep Members often complain of poor sleeping patterns and a feeling of being ‘tired all the time’. Try some of the suggestions below to improve your quality of sleep. 1. Mattresses should be changed at least every 10 years. Quality deteriorates by up to 75%. Make sure you have the right mattress, test prospective beds by lying down in your normal sleeping position. 2. Cut out coffee. Reduce your intake of stimulants, including teas, coffee, cola and other caffeinated drinks, especially in the evening. Stick to milky drinks instead. More than one or two units of alcohol will also impair your quality of sleep. 3. Exercise more. Moderate physical activity lasting 20 minutes or more, three times a week, will help you sleep better and give you more energy. Because exercise is a physical stressor to the body, the brain compensates by increasing deep sleep. Light activity early in the evening is best. 4. Meditate. Use visualization or meditation or relaxing music to help yo…