Pmg Awareness Organization, Inc.

Rating: 4.88 stars   69 reviews

Issues: Health, Human Services

Location: P.O. Box 37301 Jacksonville FL 32236 USA

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
2014 Top-Rated Nonprofit
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EIN 45-4626426
904-894-9745
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Community Reviews

Rating: 5 stars   Featured Review

2 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.

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

 
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catrina (Nonprofit Staff) wrote:

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!

Rating: 5 stars  

1 person found this review helpful

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.

 
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Rating: 5 stars  

1 person found this review helpful

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.

 
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Rating: 5 stars  

1 person found this review helpful

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!!!!

 
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Rating: 5 stars  

1 person found this review helpful

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

 
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Rating: 5 stars  

This organization has helped me in many ways my son is affected with pmg and the support of this group has been wonderful. Thank you to all who have volunteered, advocated, and created this group so that we have some where to turn often there is no where with rare disorders this group has been amazing.

 
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Rating: 5 stars  

As the parent of a child who has been diagnosed with PMG this site is a valuable resource to get some insight from other families and professionals on this matter.

 
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Rating: 5 stars  

Thank god for this organization! When no one else has any answers and support is so hard to come by, This organization delivers where no one else can. Keep up the great work. I sleep easier knowing our daughter has a caring group of people trying to make her life and many others better each day.

 
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Rating: 5 stars  

When our son was diagnosed with PMG at birth, we were very lost and scared. No one we knew had even heard of PMG (including some doctors!) Then we found the PMG Awareness website and started getting information and support through the group and its members. This group has been a life saver for us. We continually get information and inspiration from this group and the families that it brings together.

 
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