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2015 Top-Rated Nonprofit

PMG Awareness Organization, Inc.

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Nonprofit Overview

Causes: Health, Human Services, Specifically Named Diseases

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

Community Stories

40 Stories from Volunteers, Donors & Supporters

3 Mandy10

Client Served

Rating: 5

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.

Comments ( 1 )

catrina 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!

General Member of the Public

Rating: 5

Great organization that creates awareness for this rare disease. We have many new contacts and resources due to their work!

General Member of the Public

Rating: 5

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

Stephanie213

General Member of the Public

Rating: 5

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

General Member of the Public

Rating: 5

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.

Shannon106

General Member of the Public

Rating: 5

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

roxanneserinity

General Member of the Public

Rating: 5

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

Previous Stories
1

General Member of the Public

Rating: 5

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.

Natalie66

General Member of the Public

Rating: 5

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

General Member of the Public

Rating: 5

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.

1 Laurie83

General Member of the Public

Rating: 5

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.

1 Jan_73

General Member of the Public

Rating: 5

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.

1 Christine159

General Member of the Public

Rating: 5

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.

General Member of the Public

Rating: 5

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.

General Member of the Public

Rating: 5

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.

1

General Member of the Public

Rating: 4

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!

Julissa1

General Member of the Public

Rating: 5

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.

Previous Stories
1

General Member of the Public

Rating: 5

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.

Comments ( 1 )

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catrina 09/23/2012

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!

Karen310

General Member of the Public

Rating: 5

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

Jennifer419

General Member of the Public

Rating: 5

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.

Wanda13

General Member of the Public

Rating: 5

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!

Rachel135

General Member of the Public

Rating: 5

This is an excellent organization. They do great work to raise awareness and help families in times of need.

General Member of the Public

Rating: 5

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

Previous Stories
1

Client Served

Rating: 5

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

Comments ( 1 )

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catrina 08/20/2013

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!