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  

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.

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Rating: 5 stars  

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.

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Rating: 4 stars  

1 person found this review helpful

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!

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Rating: 5 stars  

The PMG Awareness Organization has been a valuable resource as we learn to care for our son who suffers from PMG. Their resources and research have made our job of caring for our son much easier and effective. It gives parents the resources and contact that individual parents do not have time to research. They make us feel less isolated and alone in our journey. Their convention was one of the best experiences we have had in our journey with PMG.

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1 previous review
Rating: 5 stars  

1 person found this review helpful

I would have been lost without this group. They have helped my family navigate my son's PMG diagnosis. They are always there for me and my son. I know I have somewhere to turn when I have a concern. Their support and dedication is invaluable to the children with PMG. THEY NEED THIS GROUP TO ADVOCATE FOR THEM AND THEIR FAMILIES.

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2012

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catrina (Nonprofit Staff) wrote:

Julissa, thank you so much for your support of our organization. It's people like you who keep us pressing forward to make a difference!

Rating: 5 stars  

I do not have a child effected by PMG, but I have learned so much from the group and the people the run it.
I see the work they do and all the people they help. I feel blessed to know these family and their children

When was your last experience with this nonprofit?

2014

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Rating: 5 stars  

When my daughter was first diagnosed with PMG several years ago, there were no support groups or organizations available to help me understand or give me answers or hope. PMG Awareness is a Godsend for confused parents and those who need support, answers, and simply to know there are others in your same situation.

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Rating: 5 stars  

I absolutely don't know how I would make it without this group. They're there to provide answers when you have questions, to lift you up when things aren't going well and to offer support. They understand what you are going through because chances are someone has been through the exact same thing that you're going through. They absolutely "get it"! Through this organization we have met and made life long friendships and extended our family to include each and every one of these families. We're there to share their sorrow and sometimes their loss but to rejoice with the triumphs! This organization not only provides us with great resources but with the help we need not to face our journeys alone!

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Rating: 5 stars  

Love this group. Has really helped my family in time of need.

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1 previous review
Rating: 5 stars  

1 person found this review helpful

Great site. Provides helpful resources. Connected with another parent fromthis site. We text and talk a lot. Wonderful resource.

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

Was this review helpful? 
catrina (Nonprofit Staff) wrote:

Thank you so much for taking the time to review our organization! We realize how much it means to be able to connect with others who know what you are going through!

Rating: 5 stars  

Striving to raise recognition and awareness. Great support for families dealing with the challenges of this illness. I have a daughter that may not have this illness but the small support groups that I belong to are a help to me. With rare problems it's easier to get direction from someone who's been there and not always is that the physicians that are treating the illness.

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