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.
This charity represents a HUGE part of my life !! It represents my son and the fight for awareness of pmg !
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!!!
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.
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.
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.
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.
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.
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.
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.
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.
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!!
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!!!
Great place to find support and information about PMG.
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.
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.
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.
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!!!!
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
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
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!
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!
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!
Striving to raise recognition and awareness. Great support for families dealing with the challenges of this illness. I have a daughter that may not have this illness but the small support groups that I belong to are a help to me. With rare problems it's easier to get direction from someone who's been there and not always is that the physicians that are treating the illness.
This organization strives to provide answers to families dealing with PMG when there are no answers to be found! They provide support, information and guidance. If it were not for this organization, PMG families would not be able to communicate world wide with other PMG families. It is a small organization with a big heart and an even bigger determination to bring PMG to the awareness of the medical field and the public alike!
My great-granddaughter has PMG and thanks to this organization and the determination of my granddaughter she has found the path to services that are greatly needed. Please support the great non-profit!
Having a son with two rare diagnosis, PMG being the primary one and the most challenging of the two. Words do not cover the appreciation I have for this group which enables me to travel this unknown, and very scary journey with others that are on the same path. This organization provides support to me and my family, information to questions I have which help me be a better advocate for my son and brings awareness to a very unknown, but heart breaking and sometimes fatal, disorder. Thank you for being there for us PMG Awareness Organization!!
This organization has helped me in many ways my son is affected with pmg and the support of this group has been wonderful. Thank you to all who have volunteered, advocated, and created this group so that we have some where to turn often there is no where with rare disorders this group has been amazing.
While I'm not a professional with expertise in this field, I am a nurse who has worked with a patient with PMG. I'd never heard of the condition. This group is critical in bringing awareness to the condition and support to each other.
My daughter was diagnosed at 4 months old with bilateral perisylvian PMG. She is now two and a half. I am so thankful to see this organization trying to help these children when it seems like there is no where else to turn. Keep up the great work!!
As the parent of a child who has been diagnosed with PMG this site is a valuable resource to get some insight from other families and professionals on this matter.
Thank god for this organization! When no one else has any answers and support is so hard to come by, This organization delivers where no one else can. Keep up the great work. I sleep easier knowing our daughter has a caring group of people trying to make her life and many others better each day.
When our son was diagnosed with PMG at birth, we were very lost and scared. No one we knew had even heard of PMG (including some doctors!) Then we found the PMG Awareness website and started getting information and support through the group and its members. This group has been a life saver for us. We continually get information and inspiration from this group and the families that it brings together.
I personally have not been affected by this, but I do know a family that has. This family's daughter was born the day before my daughter - her mother and I commiserated throughout our pregnancies together. When her child first began to experience issues I was heartbroken for them...and felt awful as there was little I could do for any support. Once her diagnosis was made they didn't know where to turn or what to do. This organization helps provide answers, outlets, guidance...and help connect them with other families going through similar experiences with their loved ones with PMG.
This organization is the only one I know of serving children and adults with the rare brain malformation polymicrogyria. My son is 15 and has this disorder. The organization has helped me connect with other families when I am seeking information, and also operates a very informative website for the newly diagnosed or for others who want to know more about the condition.
As the parent of a child with PMG, I am comforted to know that there is a group of people I can go to with questions and concerns. The organization's website provides detailed information about PMG, a brain malformation. The organization also had its first conference this year, and although I was unable to attend, I hope to be able to attend in the future.
Thank you so much for taking the time to review our organization! We surely hope to see you all at a future convention as well.
My daughter was diagnosed with bilateral frontal PMG earlier this year. Many neurologists don't even know about this disorder so it was very difficult to get information. PMGAwareness has been such a great organization to help me find some answers to my questions. It is so nice to talk to other parents that are dealing with the same things I am. Nobody in my real life understands what I am going through but those I have connected with through PMG awareness get it. They have been in my shoes and care about me and my family. I don't know what. I would have done without this organization to help me find some answers and support.
I personally have not be affected by this, but I do know a family that has. When they found out they did not know where to turn or what help was out there. With help from organizations like this one; they are able to get answers to their questions. Also, they can get support from others whose child or family member has PMG. I am happy to help this organization out with what I can. Keep up the good work.
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.
Wonderful and compassionate organization. I have worked with Brandy and Catrina in the beginning and was floored by their level of commitment to the cause and to helping others. They have grown this organization into something much more than simply a nonprofit. They genuinely care about each child, family and donor. I don't think you can work with a better group.
PMG Awareness is a wonderful organization of people passionate about the children affected with PMG. As a parent with a child with PMG, it is wonderful knowing that this organization is out advocating for awareness. I am also grateful to be able to contact them for information.
I remember the day we found out that our daughter has PMG. I was confused, devastated, lost, the list could go on and on. I got home and instating started bawling. Her doctors had no clue what to expect of her or what she would be able to do (one even told me that she'd never walk! And she can by the way!) After I got my self pulled back together I went to google. And found PMG Awearness! And it couldn't have been more helpful and supportive! They have a Facebook page that has been nothing but support and encouragement, and lots of answers to questions only us PMG parents could ever understand. Stories of milestones that our children have reached, words and stories of encouragement when you feel like crap and are upset and stressed, being able to vent to people who totally get it and understand where you are coming from! PMG Awearness is an awesome organization with lots of help and support! I don't know what I would do with out them!
My son was diagnosed with a rare brain disorder called polymicrogyria at 5 years old after several seizures out of the blue. I was so happy to find a place to discuss issues and learn about this disorder. The PmG awareness group also gives valuable and reliable information on doctors and research that otherwise would be difficult to find.
Our son was diagnosed with this rare brain condition. Being rare, there really is little information and support out there...thank goodness for PMG Awareness, they have been a godsend!
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.
Like many others, Polymicrogryia was a foreign word to me. I was terrified to research it. I had a waiting period of two months before our geneticist could explain what this scary word meant. Another parent told me about PMGawareness.org and when I visited the site, I was terrified. Much to my surprise, they helped me fully understand what PMG is, medically and every other way. These other parents have helped me in my lowest times. I am so grateful for this organization. Unlike other conditions, you can't find other parents easily that are going through the same thing. I felt so alone in this until I found this organization and other families. This organization will always be in my heart!
We are so grateful to you for taking the time to let others know that there is an organization that is working to make a difference in the lives of our families.
I am so blessed to have found this organization 4 years ago when my son was first discovered to have polymicrogyria. After his MRI when I googled PMG all I found was scientific articles that made our son's future sound bleak. Then I found this group and suddenly life seemed better. It is a place of support and truth about PMG: families sharing with families about resources, successes and challenges we have and will face. I am thankful that awareness about this brain malformation is available.
Thank you Susan! That was our experience as well. That was the reason we started PMGA, to help our families have information in lay persons lingo and to provide support and awareness.
This organization has provided much needed support to families of PMG children.
It is a great place to receive information and to connect with other families.
The service provided is invaluable.
Thank you so much for your review. Your review will help us keep our ratings up. Donors often look up our reviews to see if we are making a difference. Thanks again!
Thank you so much for your review. Your review will help us keep our ratings up. Donors often look up our reviews to see if we are making a difference. Thanks again!
When We came Home from the visit with the neurologist and first heard the word polymicrogyria, we were lost. One of the first things I did was go online to learn more about it. Usually that's a horrible idea. But this time I stumbled on PMG awareness organization. It has provided so much direction and education. I've stayed connected with them ever since and can't wait to get together at the next convention.
i am an adult with bps pmg epc hit when i was 55yr old 2009
i am /was a nurse but am now a pt . disabled
what i have gone through has been a rollercoaster ride of reports and emotions
each month something new attacked my body and still is .
trying to understand what was happening to my body and deal with the barrage
of tests and horrible meds has been a nightmare that no one else seems to be able to comprehend
all i get is " you look good" while the intractable neuro pain burns my Lt face hand and foot .
one month in i lost the ability to talk , spent a yr working at home every day and still have difficulties with S's , or any sound that requires a smile as 1/2 the face tongue larynx and trachea are frozen - muscle moves - nerves do not send correct message .
the worst part for a child i think is my epiglottis does not close , EVER , so saliva pools at my vocal chords and i must stop and take a breath in and then swallow , thousand times a day !
NEVER lay on your back !!! on affected side to sleep and drool onto pillow .
never feed mixed textured food eg require chewing and swallowing at the same time - soup w/ noodles . stay away from grapes , tart oranges or drinks , watermelon , keep head bend down so fluid stays in mouth until ready to swallow .
good foods , bananas , avocados , thick power drinks , grains , meat , sandwiches if not too wet ,
i use a straw to drink water , get it in fast and down the right tract . bolis of foods are good
i had diff. eating as i couldn't move the food around in my mouth properly / has improved with exercise . hearing loss , strange sounds , buzzing clicks hissing . crowded rooms VERY uncomfortable , hurricane in my head 24/7 pain pills help ?5% not worth the side effects and kidney damage. no longer feel my skin ,pain was so great shut off all sensation , pain internal now, plus allodynia in hand , touch anything cold or smooth glass, metal SCREAM ! must keep affected side warm . 2 yrs later can't feel muscles , and last yr , ligaments and tendons ! torn rotator cuff because i could not tell how much i was lifting . any extra pain experience to LT side is held onto for days longer . having balance issues , Lt leg does not lock into place very tiring to stand and limited walking . acute motor skills lost in hand , cannot tell diff. between hot and burning temps
people ask " what do you do all day"? it take twice the time to do anything and you must be aware of everything you are doing at all times . i aspirate all the time , usually the first bite when i am not ready , or the last bite when i put my guard down my life is all about concentration just to get through my ADL as an adult i have the knowledge to comprehend some of this and had the skills i lost to relearn , but as a parent with a child my heart goes out to you with their inability to communicate their pains and needs i wish you all the love and success required to bring you child through this difficult time
This group goes above and beyond to get families together and to research all kinds of information and support for families with children who have been diagnosed with PMG. The organizers are driven by their liove and dedication to their own children and by their desire to gather up and help all families who have children in the same situation.
My son has PMG & when we first got the diagnosis, we were scared & felt alone. This organization made us realize that we're not alone.
My daughter was diagnosed with PMG at 9 months. I live in Australia and the doctors I was seeing at little knowledge of this malformation, the Internet just gave a brief explanation. Through this organisation I have gained so much knowledge and so much support. Just knowing you can speak to someone who knows what you are going through is a breath of fresh air and makes everyday a little easier. Thank you PMG.Org.
My daughter was diagnosed at 2 months old with Polymicrogyria. We were scared and in desperate need of information and support and found very little at that time. Since then PMG Awareness has been created and it is such an amazing gift to the families of children with PMG. I wish we had had this to go to when we started our journey! They are doing great work!
Thank you so much for taking the time to review our organization, Tamara! Our goal is to have the opportunity for every newly diagnosed family to get the information and support they need.
This is a wonderful non profit organization that has helped to connect so many families who's lives are affected by PMG and it has helped to inform and educate the public about this rare disorder. This organization has helped to give so many families hope for their children's future and comforted many in their times of need.
Shannon, thank you so much for taking the time to review our organization! We look forward to helping so many more families in the future!