Get to Know PMG Awareness Organization

About Polymicrogyria (PMG)

Polymicrogyria (PMG), is a condition characterized by abnormal development of the brain before birth. While a baby is still in the womb, neurons are migrating to where they are supposed to go. The neurons become disorganized and land in the wrong places. The surface of the brain normally has many ridges or folds, called gyri. In children born with Polymicrogyria, the brain develops too many folds, and the folds are unusually small. The name of this condition literally means too many (poly-) small (micro-) folds (gyria) in the surface of the brain. These small folds do not process the information it receives like a normally formed brain. This causes problems with functioning in the body much like how the effects of a stroke can affect the brain. The impairments that are seen as a result of PMG depend on what part of the brain is involved and how severe the deformity is. The effects of this disorder can range anywhere from Speech, physical, and cognitive delays, to severe epilepsy, organ failure, and death..

Polymicrogyria (PMG) Clinical Features

There are several different forms of Polymicrogyria. Even though multiple children may be diagnosed with the same form, PMG affects every single child differently. Common problems associated with PMG in general are: swallowing and speech difficulties, reflux, seizures of varying degrees (about 90% are affect with seizures at some point in their lives), development delays, lack of muscle coordination, impaired cognition of varying degrees and cerebral palsy, organ failure and more. PMG can also cause problems with vision, cognition, hearing, breathing and maintaining body temperature. Sometimes it comes with other diagnoses such as cerebral pasly, epilepsy, hydrocephalus, macrocephaly, microcephaly, and more.

Get to Know The PMG Awareness Organization

The PMG Awareness Organization is a 501(c)3 national nonprofit organization of families, caregivers and medical professionals who care about those with Polymicrogyria. We are committed to bringing awareness of Polymicrogyria (PMG) and to be a guiding light for those who have lost their way after being diagnosed.

Our goal is to provide a comprehensive overview of Polymicrogyria by:

--Offering support and education to all individuals and families who are affected by Polymicrogyria and keeping them abreast of the latest medical information, treatments, therapies, medications, potential procedures, financial resources and research available. -----

--Maintaining a current and up to date list of available resources and links to pertinent information having to do with Polymicrogyria.

--Advocating to raise awareness and increase the public’s knowledge of Polymicrogyria, to create change by encouraging people speak up about Polymicrogyria and lead our families as well as the public to improvements in policies, legislation and service development.

--Offering support and encouragement to families and individuals affected by Polymicrogyria through different organizational programs such as Contact A Family, Birthday Program, Support Groups, Meet-Ups, Conferences, Regional Ambassadorship program, etc.

I am especially proud of ...

I believe our pride and joy would be our online support group. We have a very solid group of PMG diagnosed families that continually support each other, encourage each other, share resources, and intend to inspire. At the height of the recent Covid-19 lockdowns, many of our families struggled as their children were thrusted into a world that none of us were sure how to handle. Though this group has always been encouraging, it went from several different families, to one big family. This type of connection is what has made our organization what it is today.

Excited to REN because...

Education regarding epilepsy, it's effects, origin, and causes will be big for our constituents. Sharing valuable knowledge and education will be empowering to our families. As REN has more collaborative opportunities in the future, I would love to encourage our constituents to get involved and assist in all aspects of the joined mission. I am excited to see the multiple ways in which The PMG Awareness Organization and REN can work together and enhance lives for all connected parties.

My journey and motivation...

When our son Luke was approximately 18 months, we had noticed that he hadn't hit a few milestones, and that he seemed to neglect using his left arm. After approaching his pediatrician, the doctor explained that all children are different, not to be concerned, and that Luke was probably just really "Right-hand dominant". Within about 2 weeks of that meeting, our 18 month old fell into what seemed to be a grand mal seizure. We rushed him to the local childrens hospital. Right after being connected to the EEG, our son had another seizure. After multiple tests, we learned Luke had Unilateral Focal Polymicrogyria. We had no idea what it was or what it meant. After searching online for others who may have answers, we came across the PMG Awareness Organization. After becoming close friends with the board, I was invited to help as a volunteer. Now, I have the honor to lead this great organization that was there for my family in our time of need.

By Cody Stevens - President/Chief Executive Officer