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.
Great organization that creates awareness for this rare disease. We have many new contacts and resources due to their work!
I love this non profit, they give me a chance to connect with other parents and get great info regarding my PMG baby.
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.
Organization has really helped bring awareness and families together. Honoring our children, fighting a lifelong battle.
This organization has been so helpful! So much knowledge and support!
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.
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
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.
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.
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.
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.
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.
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.
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!
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.
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.
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!
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
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.
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!
This is an excellent organization. They do great work to raise awareness and help families in times of need.
Love this group. Has really helped my family in time of need.
Great site. Provides helpful resources. Connected with another parent fromthis site. We text and talk a lot. Wonderful resource.
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!