Skip to main content


Watch out, Boise Spartan Race, here comes Jared Ulmer! A self-described family man and health enthusiast, Jared also lives with Erythropoietic Protoporphyria (EPP) - a rare diseases that results in extreme pain with exposure to sunlight. You may know Jared from his YouTube channel, PorphyriaJ where he creates awareness about this rare disease and illustrates living with it in his own unique way through honest and entertaining short videos. (Porphyria J)

This Saturday JUNE 23rd at 8:45AM MST, Jared will take on the SPARTAN SPRINT! Jared will run 3+ miles and overcome 23 daunting obstacles in the Boise Spartan Sprint on behalf of Porphyrians everywhere. The Spartan race motivates people to get out of their comfort zones and grow through resiliency. In order for Jared to complete this race - he will test every ounce of his resilience. For Jared, this race is an outward expression of a deep internal struggle that has developed through a lifelong challenge of avoiding sun exposure. He wants all who suffer from this disease - which has no FDA-approved treatment and no cure - to know they are not alone and to believe that positivity is created by taking care of yourself and focusing on what you can do. You will hear Jared say 'Seek Shade and Stay Happy' - a motto he lives by and shares with all who suffer along with him.

Jared will race on behalf of the AMERICAN PORPHYRIA FOUNDATION. Donations to the American Porphyria Foundation can be made through FirstGiving. Please help Jared reach his goal of raising $1,000. The APF enhances public awareness, develops education programs and materials, and supports research to improve treatment and ultimately a cure for Porphyria. Jared still has his original APF pamphlet and free materials he and his parents first received due to donations like yours. These free materials are what educated Jared on how to handle EPP, and that let him know he wasn't alone. PLEASE SUPPORT JARED AND ALL WHO LIVE WITH EPP ON JUNE 23RD BY DONATING TO THE APF!


Popular posts from this blog


GLOBAL PORPHYRIA ALLIANCE The APF is proud to support our members that live across the globe. Many countries around the world have developed organizations to support their local communities. We hope that enjoy the same opportunity to communicate with one another, develop friendships, and learn about porphyria. Here are links to patient advocacy groups worldwide that offer support to individuals impacted by porphyria. Argentina: Centro de investigaciones sobre porfirinas y porfirias | More informationAustralia: Porphyria Association, Inc. | More informationBrazil: Associação Brasileira de Porfiria | More informationCanada: Canadian Association for Porphyria | More informationColombia: Fundación Colombiana Para La Porfiria | More informationDenmark: (Porphyria Association Denmark)Denmark: (Danish Porphyria Support Group)England: British Porphyria AssociationFinland: Finnish Porphyria Support Group France: Association Française des Malades Atteints de Por…


What could it be?
Nerve Pain WHAT IS NEUROPATHIC PAIN? Neuropathic or nerve pain (NP) is a long-term or chronic pain disease that results from nerve damage. It can be caused by different diseases or conditions. Worldwide nerve pain affects as many as 26 million people. Neuropathic or nerve pain may affect larger areas of the body or it can be restricted to a smaller area, in this case it is called localized neuropathic pain (LNP). WHAT CAUSES NEUROPATHIC PAIN? Neuropathic or nerve pain may occur in the absence of an obvious visible cause (e.g. an accident, an injury, a chemical burn). There are several external situations that can directly damage nerves and lead to neuropathic pain, such as: Amputation of a limb (phantom pain, stump pain)Surgery (scar pain, post-surgery pain)Trauma or accident Neuropathic pain is also a common complication of other diseases, including nerve damage after shingles or herpes zoster infection (postherpetic neuralgia or PHN), nerve damage after HIV infectio…

Happy Winter Season!

                  Happy Winter Season!