Organization Spotlight: The PMG Awareness Organization
About Polymicrogyria
Polymicrogyria (PMG) is a condition characterized by abnormal development of the brain before birth. The surface of the brain develops too many folds, which are unusually small. These small folds do not process the information it receives like a normally formed brain. Affected people may experience recurrent seizures, delayed development, crossed eyes, problems with speech and swallowing, and muscle weakness or paralysis.
About the Organization
The PMG Awareness Organization is a 501(c)3 nonprofit organization of families, caregivers, and medical professionals who care about those with Polymicrogyria. It is committed to bringing awareness of Polymicrogyria (PMG) and to being a guiding light for those who have lost their way after being diagnosed.
The PMG Awareness’ goal is to provide a comprehensive overview of Polymicrogyria by:
Offering support to all individuals and families who are affected by Polymicrogyria;
Educating families who are newly diagnosed as well as continuing to educate those already diagnosed by 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 to speak up about Polymicrogyria, and lead their 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, Traveling Awareness Bears, Support Groups, Meet-Ups, Conferences, etc.
To access PMG resources, visit: https://pmgawareness.org/resources/
Contact Information
PMG Awareness Organization, Inc.
4533 MacArthur Boulevard Suite #5182
Newport Beach, CA, 92660
Phone: (949) 329 – 5975
Email: information@pmgawareness.org
Visit https://pmgawareness.org/ and
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