Faisal Naqvi runs Reebok Ragnar Northwest Passage to Raise Awareness for Daughter’s Skin Disorder

Faisal Naqvi began running two years ago for his daughter. She was born with an incurable skin disorder, Epidermolysis Bullosa, which causes the skin to constantly tear, shred and blister. Faisal joined a running team that raised money for EB research at a half marathon. Two years later, he’ll run his second Reebok Ragnar Northwest Passage motivated by his daughter. This is his story:


I started running in 2015 at the age of 43. I started running not for my health, but for my daughter.

You see, my daughter was born with an incurable genetic skin disorder called Epidermolysis Bullosa or EB. EB is a skin disorder in which collagen and/or keratin, the proteins that help bind your skin to your body, are not produced at all or produced at less than a 100% level. It causes the largest organ on your body, the skin, to tear, shred, and blister constantly from friction. This activity occurs not only externally but damages the internal organs as well, including inside the mouth and even in the esophageal track. There is no cure. Only long-term pain management and daily wound care, the latter requiring us to give her diluted bleach or vinegar baths and tend to her wounds (which consists of skin debridement (remove crusts/scabs), popping blisters and removing tough skin) to promote healing skin.


I started running when I joined a team for an awesome organization by the name of EB Research Partnership that directly funds research to help find a cure for EB. I had ten weeks to prepare for a half marathon. I ran/walked that half and our team raised about $19,000. After that, I ran a few other races (5ks, 10ks and a few more half marathons) just to keep running. In January of 2016, a friend of mine asked me to join her team for her Ragnar Northwest Passage. I trained and ran through a few injuries but had the time of my life. I vowed to do it every year the team will run because it was just such a blast. This year, I’ll be partaking in my second Ragnar Northwest Passage.

My team, Ped Zeppelin, is a group of awesome and fun people for all walks of life and run for a multitude of reasons, but primarily because they all love it. Some of us have been running for years and some of us, like myself, started only recently. Of course, in the end, it’s all about the experience, the fun, and the friendships when it comes to participating in Ragnar. Fun is better had when every single person is having it.


Not only have I made many new friends through running and through Ragnar, but solidified other friendships as well. I don’t run the fastest. I’ll never place or medal in the top 10. That’s not why I do it. I just do it to run. For fun. Just like my daughter wants to do, just play and have fun like any normal kid would, through being uncomfortable, and sometimes being in pain. That’s why I run. For her.


To learn more about EB, please visit http://ebnurse.org or help Faisal’s team by donating to the EBRP fund.


2 Responses to Faisal Naqvi runs Reebok Ragnar Northwest Passage to Raise Awareness for Daughter’s Skin Disorder

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