PMG Awareness Organization, Inc.
Rating: 4.88 stars 69 reviews
Issues: Health, Human Services
Location: P.O. Box 37301 Jacksonville FL 32236 USA
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
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1 person 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 place to find support and information about PMG.
Great source of information for families who have
children recently diagnosed with PMG. I don't know
what my family would have done without them.
You just received the devasting diagnosis that your child has PMG. What is PMG? What does mean for my child? Where do I go for information? Help? Support? For all parents of children with PMG there were few answers to those questions until this non-profit came to being. Started by a few individuals whose lives were touched by this condition, the non-profit now helps hundreds if not thousands of families around the world, yes the world, to find the support and information they need. Where the medical community falls short this group makes every effort to help those families who have received this diagnosis. Help them to spread awareness through your financial support.
This group is a God send. We did not know alot about PMG when Jorden was born 14 years ago. But because of what this organization has done to promote awareness it has changed the lives of many. They support the families as best they can with research info and other things. They were there for us when we needed them most. That was when we lost Jorden. I still follow them and know we will always be part of the PMG family. Great group of people who love our PMG Angels and Families.
I am a 55 year survivor f PMG and 2 other brain disorders and finding PMG awareness in 2012 helpedme to understand my condition lot better and to give hope to others.
My daughter has PMG and PMG Awareness Org has helped us learn so much! Not only have we learned about the condition, but I have been able to refer medical professionals and therapists to the organization to learn more about her PMG as it is so rare. It has also helped create a network of support for those of us with PMG in our lives. WONDERFUL organization!!!!
I am a mom of two 33 with two so complex brain disoders and when I don't have the answers my friends at pmgawareness.org give me encouragement
They work hard for the families who don't have answers and need somewhere to turn for help. Those who are going through the same thing as them. Support, advice, insight. Many would be lost without them.
My niece has PMG and it took almost 3 years to diagnose. The worst part for my sister and her husband was not knowing what was wrong but now at least to have a community has helped them a lot. Its also been very helpful for the rest of the family and friends to have a resource where they can go to to learn more. Keep up the great work!