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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

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!

2 Mandy K.

Client Served

Rating: 5

I found PMGA a few years back and we were fortunate enough to attend the conference in 2013. It was so amazing to meet all the families who just get it! Since then we have stayed in touch and enjoyed getting involved with PMGA to help spread awareness and raise money for research and future events.

Previous Stories
1

Board Member

Rating: 5

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.

1 Robin37

Board Member

Rating: 5

PMG Awareness Organization is an international nonprofit charity that supports families and loved ones who are affected by PMG. This organization has been monumental in allowing families to connect with one another, share stories, offer advice and support, and to ask questions that can only be answered by parents going through the same journey.
PMGA organization offers many programs to help support the families such as celebrating a child's birthday by sending them a card, having an ongoing list of families in different states as a "contact family", maintaining a functional website and a very active facebook page.
The organization has acquired a sponsorship with TruSpeed Autosports and has all the children's names on the roof of a racecar along with PMG's logo. This car races all over the United States and the race team just announced that going forward, they will have the PMG logo on all their race cars! This is a fabulous way to raise awareness. I am so exited about all of the new awareness items coming out...tshirts, awareness ribbons, calendars etc.
This organization allows people to longer feel alone. The families in this group are taken care of and are treasured as are the children. I am so very thankful for this amazing group and I would not be where I am today without the help and support this group has offered me this far! Truly amazing!!

Previous Stories
2

Board Member

Rating: 5

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!!!

Brandy9

Board Member

Rating: 5

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.

1

Board Member

Rating: 5

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.

Comments ( 1 )

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catrina 09/24/2012

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

1 Carole B.

Board Member

Rating: 5

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.