• Shannon Burkoth

Meet Evan, he has a #RareDisease Polymicrogyria (PMG), and his Mom, Tara, is a Rockstar Advocate!


I met Tara at the Global Genes Summit in sunny California last month. We met in the elevator when we first arrived at the hotel. She seemed pretty nice, we exchanged pleasantries, found out we were both there for the summit, she was there as a parent advocate and I was there as a patient advocate. We headed off to our rooms. We met again the following day at one of the breakout sessions at the end of day 1 and started chatting about one another's lives, kids, why we were there, etc... We were so interested in eachothers stories that before we knew it, it was 11pm and this narcoleptic needed to get to bed! By the end of the conference we had become both friends and advocates for eachother and have kept in touch ever since!

Tara's 3 1/2 year old son Evan, has a rare disease Polymicrogyria, or PMG for short (www.PMGawareness.org). He was diagnosed shortly before his first birthday. Tara has been a champion for supporting him and PMG ever since! She quit her job to stay home, with her husbands support, to take care of him and travel to his many doctor appointments, became involved in various efforts for awareness online and at the government level, she is active in the Colorado Rare community as well. Tara's 7 year old daughter Paige (we both have a Paige,lol) loves to advocate for her little brother any chance she gets as well, its a family thing, as it should be! Tara's family did a virtual run in Evan's honor and hosted a live 5k in their home town with a party afterwards at their home. The turn out was awesome! This fundraiser was to support the PMG Awareness foundation. The great part about it being virtual was that friends and family from all over were able to participate, donate, and support Evan in his battle to find a much needed cure! I joined her family as a virtual runner from Wisconsin, wore my shirt and race bib on race day that was proudly titled "Team Evan"!

Polymicrogyria- let’s break this big word down into it’s basic parts. “Poly” means many, “micro” means very small, and “gyria” is the medical term for the wrinkles in the brain. So we have “many very small wrinkles in the brain”. During the baby’s development in the uterus the nerve cells divide and make up the layers of the brain and make the wrinkles (gyri) of the brain. With PMG, that process is altered and it causes the brain to form improperly. It forms small wrinkles which don’t process the information it receives like a normally formed brain. This causes problems with functioning in the body much like a stroke can affect the brain. Depending on what part of the brain is involved and how severe the deformity is, results in the impairments that we see with PMG.

If you can help, you can make a donation to www.PMGawareness.org and make a difference in Evans life today!

#PMG #RareDisease #Advocate #GlobalGenes

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