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  

Wonderful! Great support for families! My best friends daughter has PMG and I know she and all the other PMG babes I follow are thankful for the support and awareness this organization gives!

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Rating: 4 stars  

I have done volunteer work with this organization and the families and children are amazing. More attention and awareness is needed when it comes to this disorder. Like all diseases, hopefully a cure will be found one day.

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Rating: 5 stars  

1 person found this review helpful

What an AMAZING group of committed Parents and Caregivers to these beautiful children. I never knew about PMG before this organization. They work hard and tirelessly to get the word out so more kids can be properly diagnosed.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 

Thank you so much for reviewing our organization, Heather! We will continue to work hard to make a difference.

1 previous review
Rating: 5 stars  

1 person found this review helpful

What a wonderful organization. As far as I know it's the only one for PMG. I love being a part of their group, it's like extended family. You always have someone to turn to who is or has gone through the same experiences. I love that a family started this organization after a family member was diagnosed, you know the passion is there.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Some

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 

Heather, thank you so much for your valuable review and especially for your time! We love that you are a volunteer for our amazing families!

Rating: 5 stars  

1 person found this review helpful

I absolutely love this group! It means the world to find others who are going through the same thing you are. You are definately not alone. I enjoy reading about the these wonderful children, and the parents are amazing as well.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 

Allison, thank you so much for your supporting our efforts to make a difference for our families!

Rating: 5 stars  

PMG awareness has shined a light where one was needed! Its been amazing to be able to see other children and have one place to go for amazing information about this disorder!

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful?