PMG Awareness Organization, Inc.
Rating: 4.91 stars 87 87 reviews 3,235
P.O. Box 37301 Jacksonville FL 32236 USA
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.
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
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
Biennial PMG Awareness Family Convention, Advocacy, Awareness Outreach, Support for Families, Research
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Reviews for PMG Awareness Organization, Inc.
3 people found this review helpful
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.
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Mandy, thank you so much for taking the time to review our organization! We consider it the greatest of honors to be there to help support our families!
Great organization that creates awareness for this rare disease. We have many new contacts and resources due to their work!
A second family, one who understands what we are going through!
I love this non profit, they give me a chance to connect with other parents and get great info regarding my PMG baby.
PMG Awarness is like a family. Any questions I might have with my daughter I ask ask and get other families thoughts. It is very helpful and thoughtful.
This charity represents a HUGE part of my life !! It represents my son and the fight for awareness of pmg !
PMG affects each person in a different way and there is no question that without the help, support guidance that this group provides, many of us would be lost at trying to understand what our kiddos face. We cannot say it enough... Thank you thank you thank you!!!
Organization has really helped bring awareness and families together. Honoring our children, fighting a lifelong battle.
This organization has been so helpful! So much knowledge and support!
1 person found this review helpful
This organization has helped me work through all of the problems that my daughter and I have faced since she was diagnosed with pmg in 2008. I continue to gain knowledge and support continuously by being a part of pmg awareness organization. When I felt completely lost and did not know where to turn they were there to help me through. I am blessed to have found a place here where I can get what I need and relate to those who understand.
What a great resource for any family with Polymicrogyria. This site helped us immensely, especially during the diagnosis period. We hope they continue to provide the same level of support for families all around the world