Pmg Awareness Organization, Inc.

Rating: 4.91 stars   86 reviews

Nonprofit Issues:

Health, Human Services

Address:

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

2015 Top-Rated Nonprofit
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More Info

904-894-9745
http://pmgawareness.org/

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Reviews for Pmg Awareness Organization, Inc.

Role: General Member of the Public
Rating: 5 stars  

A second family, one who understands what we are going through!

 
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Rating: 5 stars  

I love this non profit, they give me a chance to connect with other parents and get great info regarding my PMG baby.

 
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Role: General Member of the Public
Rating: 5 stars  

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.

 
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Rating: 5 stars  

Organization has really helped bring awareness and families together. Honoring our children, fighting a lifelong battle.

 
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Rating: 5 stars  

This organization has been so helpful! So much knowledge and support!

 
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1 previous review
Rating: 5 stars  

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.

 
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Role: General Member of the Public
Rating: 5 stars  

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

 
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Role: General Member of the Public
Rating: 5 stars  

My daughter was diagnosed with Polymicrogyria two years ago. I am based in Melbourne Australia, I've found this to be a great resource for information.

 
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Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

Having a son with PMG, we wade (& sometimes drown) in the murky waters of this diagnosis daily. And the PMG diagnosis is only one small component of the overall health snapshot of what is going on with our son. So having this organization is a godsend for our family. It gives us a place to connect with other people who speak the same language as we do and allows us to use them as a resource and a support and a springboard for new directions in care and survival. Run by honest and down-to-earth people, this organization is truly doing the work these types of organizations are meant to do, which is assist people who need it. We are very grateful for the role this group plays in our family's life.

 
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Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

My granddaughter Cora Jane was born with PMG. The PMG Awareness Organization, Inc. has provided families with PMG children a wealth of information and an incredible source of support.

 
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Rating: 5 stars  

1 person found this review helpful

I love this gourd it lets us know we not alone and helps us connect with other s who kids has the same thing and going through same to offer support and make friends.

 
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