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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

29 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!

Client Served

Rating: 5

This charity represents a HUGE part of my life !! It represents my son and the fight for awareness of pmg !

Hollie S.

Client Served

Rating: 5

PMG affects each person in a different way and there is no question that without the help, support guidance that this group provides, many of us would be lost at trying to understand what our kiddos face. We cannot say it enough... Thank you thank you thank you!!!

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 Tiffany59

Client Served

Rating: 5

My son was diagnosed with PMG earlier this year, and PMG awareness organization is one of the only resources us PMG families have. The medical knowledge is limited and this has been my main source of advice.

1 Glen S.

Client Served

Rating: 5

myself being a PMG survivor, the oldest living survivor has given hope and possible futures for many families struggling with this nasty disease, we need more research, congress to get involved so we can get the proper medical treatment and understanding about our seizures.

Previous Stories
2

Client Served

Rating: 5

I am a 55 year survivor f PMG and 2 other brain disorders and finding PMG awareness in 2012 helpedme to understand my condition lot better and to give hope to others.

2

Client Served

Rating: 5

When our infant daughter had her first MRI and they found the malformations in her brain, it could not have been more terrifying. The world and future we thought we knew had been destroyed and what replaced it was total unknown. Being diagnosed with something that is so uncommon means you have very few places to turn to for help. The PMG Awareness Organization was life saving for us, as it gave us info even our pediatrician couldn't and connected us with other families who had been in our shoes, and they were able to give the support and guidance we desperately needed.

1 Adriana F.

Client Served

Rating: 5

Great place to find support and information about PMG.

1

Client Served

Rating: 5

This group is a God send. We did not know alot about PMG when Jorden was born 14 years ago. But because of what this organization has done to promote awareness it has changed the lives of many. They support the families as best they can with research info and other things. They were there for us when we needed them most. That was when we lost Jorden. I still follow them and know we will always be part of the PMG family. Great group of people who love our PMG Angels and Families.

1 Ali_8

Client Served

Rating: 5

My daughter has PMG and PMG Awareness Org has helped us learn so much! Not only have we learned about the condition, but I have been able to refer medical professionals and therapists to the organization to learn more about her PMG as it is so rare. It has also helped create a network of support for those of us with PMG in our lives. WONDERFUL organization!!!!

1 Shannon89

Client Served

Rating: 5

I am a mom of two 33 with two so complex brain disoders and when I don't have the answers my friends at pmgawareness.org give me encouragement