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  

My daughter is 3 years old and has PMG, the PMGA Organization has given me so much information to help us understand more clearly her condition as well as ongoing support. It's so amazing to talk to other families out there that just get it! We are anxiously awaiting our next convention to get to all be together in the same room and see how far all of our kids have come.

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Rating: 5 stars  

As a founding member of this organization I just want to say I’m proud of our Board members and families! Everyone really steps up to help in any way they can. It’s amazing to be a part of an organization with so much love and support. Our families are what make us GREAT! Thank you everyone.

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Rating: 5 stars  

1 person found this review helpful

This is the first organization to target PMG specifically. Its intention is to promote awareness of PMG as well as all that it could entail. It offers support to families newly diagnosed as well as families who are currently diagnosed. It brings a lot of people together to learn more about PMG and help families and friends affected by PMG cope with the diagnosis.

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

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Mel, thank you so much for your commitment to our organization! I don't know what we would do without you!

Rating: 5 stars  

1 person found this review helpful

I have learned so much by being part of PMG awareness. The enthusiasm that this organization was found under makes it a great place to volunteer and help all the families affected with pmg.

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

I am so excited to be actively participating on the PMG Awareness Board. This organization is desperately needed to fill the void that all of us as parents and family of children diagnosed with PMG experience. From a Board Member 's perspective, I have never dealt with such integrity and professionalism. Everyone on this board has a heart of gold and is dedicated to unlocking the mysteries of PMG. One of the founders is a grandmother to a precious little girl who has PMG and is so determined and steadfast on finding ways to help not only her granddaughter, but all the other children that have been diagnosed and those who will be diagnosed in the future. It is the organizations goal for EVERYONE to know what PMG is. I am extremely proud to be serving on this board and to be working with such amazing people. This organization is going to be big and very successful!!!

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful?