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Nonprofit Overview

Causes: Health, 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

6 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!

Volunteer

Rating: 5

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!

Holly61

Volunteer

Rating: 4

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.

1 Heather50

Volunteer

Rating: 5

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.

Comments ( 1 )

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catrina 08/20/2013

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

Previous Stories
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Volunteer

Rating: 5

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.

Comments ( 1 )

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catrina 09/25/2012

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!

1 Allison16

Volunteer

Rating: 5

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.

Comments ( 1 )

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catrina 09/23/2012

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

Volunteer

Rating: 5

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!