On the days when the answers don't seem so easy to process and the challenges are even greater, I know that the folks at PMG Awareness Organization are there to help me. We celebrate the milestones together and sympathize in a way that no one else can. I have made
Mission: The PMG Awareness Organization is an international non-profit organization of families, caregivers, and medical professionals who care about those with Polymicrogyria (PMG). Our mission is to promote awareness, diagnosis, and the treatment of Polymicrogyria through education, research, advocacy, and support for individuals with Polymicrogyria, their families, and other concerned parties.
Results: Reached thousands of people globally through our website and social networking venues
Developed an informational pamphlet to be distributed to families and health care providers in all areas of medicine and therapies in English and are currently translating it to all major languages
Designed the “Contact a Family” program; an international list of parents and grandparents willing to help other families cope with the diagnosis and issues related to PMG
Recruited an incredibly talented and diverse Board of Directors and Executive Advisory Board
Collaborated with key nonprofit educators and partners
Obtained our Incorporation as a nonprofit organization based in Jacksonville, Florida
Applied for our IRS 501(c)(3) application for a charitable organization
Target demographics: All those affected by Polymicrogyria (PMG) as well as the public and medical professionals in general.
Direct beneficiaries per year: Held our first biennial family convention, received an official proclamation for Polymicrogyria Week every March, provided support via Facebook group, email, and telephones, networked and formed alliances with many organizations including American Epilepsy Society, American Brain Coalition, NIH, NINDS, and more.
Geographic areas served: The U.S. and internationally
Programs: Biennial PMG Awareness Family Convention, Advocacy, Awareness Outreach, Support for Families, Research
On the days when the answers don't seem so easy to process and the challenges are even greater, I know that the folks at PMG Awareness Organization are there to help me. We celebrate the milestones together and sympathize in a way that no one else can. I have made connections with others who have helped to navigate this road.
I personally have not be affected by this, but I do know a family that has. When they found out they did not know where to turn or what help was out there. With help from organizations like this one; they are able to get answers to their questions. Also, they can get support from others whose child or family member has PMG. I am happy to help this organization out with what I can. Keep up the good work.