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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

87 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.

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!!!

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.

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 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.

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 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!!!

1 Adriana F.

Client Served

Rating: 5

Great place to find support and information about PMG.

1

Donor

Rating: 5

Great source of information for families who have
children recently diagnosed with PMG. I don't know
what my family would have done without them.