My son was diagnosed with PMG when he was 2 years old. It was a huge diagnosis with a bunch of unknowns.
I tried endlessly to locate resources, families, Doctors- anything and anyone that might be able to give me insight on this condition.
I kept coming up short.
That time period for me and and my family was very scary and we felt all alone trying to navigate him in this world.
To name a few of the obstacles- - He wasn’t speaking, his muscle tone was weak, he wasn’t thriving, he had terrible reflux , he had global delays and any and all doctors said he would likely start seizing at anytime. Imagine that.
The doctors also were searching for a syndrome to diagnosis him with and bypassed labeling him with a primary PMG diagnosis.
When my son was 7- I went onto Facebook and found forums forming with families of PMG kids. It was so refreshing to see there was others out there. This was when I found the PMG AWARENESS ORGANIZATION. It has been the best thing that has happened for myself and my family. The information and unknowns I had been searching for were finally coming to light. I was meeting families and reading stories of exactly what My son had and ailments he was going through. I didn’t feel alone any longer.
I saw multiple references to the CMV virus as a cause and not some unknown syndrome or genetics. So many doors of information were opening.
This past summer I decided to bring my son to the convention the Organization hosted. I learned more in those 3 days then i did in the 8 years I was struggling to make sense of it all.
The team leading this organization is top notch and their need and want to educate families is exceptional. They all have lived the PMG life filled with fears struggles hardships and unknowns.
They have a passion to share information, hold your hand, raise awareness and educate. I only wish I could have found them sooner! Their network of resources is growing and I look forward to learning more and sharing in their passion on raising awareness. I live in New York and this area is desperate for awareness- including the top Doctors in the Neurology field. I am eager to see what else I can learn and just as eager to do what I can to help others manage so they don’t have to go through it alone like I did.
This organization is the winning ticket to help make it happen.
My granddaughter is Charlotte. Charlotte is almost 4 years old and was diagnosed with polymicrogyria at 1.5 years old. Last year I happened across the conference that was being held in Denver Colorado and felt the need to go, so I and my daughter and Charlotte jumped on a plane and headed off. The feeling there was that we were with family, and the speakers were amazing. We learned so much and felt so empowered from out new friends. Since then we have gotten Charlottes blood spot card tested and learned that her PMG was caused by the cytomegalovirus. We have since been to a conference on that also, and I have personally been on a champaign, especially where I work (as a labor and delivery nurse), to make change at our hospital in education and towards testing. Im still not sure how far I will be able to take this without legislation to help push it forward, but it is amazing to know that I am doing something that could help another family. Even if its just one person that doesnt have to go through our journey. Its so incredibly helpful to be able to do something. In the next few months, I hope to start working toward contacting legislature representatives. The PMG Awareness Organization was absolutely key in our journey, and are very much like family.
PMG Awareness is such a wonderful organization. They do so much to support those affected by PMG by bringing awareness, support, education, and advocacy. They just had their 2nd International Convention for families affected by PMG and it was phenomenal! They truly are incredible!
My daughter has bilateral Polymicrogyria Perisylvanian with Cerebral Palsy. I cannot explain or put into words how impirtsnt this nit fir profit has been for me.
This organization made me feel less alone during some of my darkest days! I found this organization and their Facebook page shortly after getting my daughter’s PMG diagnosis when she was only 3 weeks old. It was a diagnosis we were NOT expecting and it was terrifying. I have learned so much and the support has been a god-send.
My daughter was diagnosed with bilateral perisylvian PMG at 4 months old, while she was still being cared for in the NICU. All the info I was given by doctors and all the info I could find online was terrifying. I felt alone as this diagnosis is so rare. It wasn't until I found PMG Awareness Organization, Inc that I saw that I want alone. I found happy families thriving with PMG family members. Not only that, the children suffering with PMG were happy and thriving. It gave me the confidence and support I so desperately needed.
Amazing people that exemplify a thoroughly informative and compassionate group that unifies all the families involved. This group is very active and supportive of all families from diverse situations. Was a big help for our family as they helped us during a time of deep loneliness while dealing with my son's disability. We feel blessed to have been able to be a part of the groups efforts. So much information and they have a deep desire to help every person in the group. Also great awareness projects through out the year.
This place let's the parents talk to each other & help each other especially when we r having a hard time someone is there to talk to
I have 2 children with PMG. This group has been there for me so much over the past few years. Being able to connect to others going through the same things I go through has been a life saver for me. I felt so alone at times but this group has brought so much awareness to such a rare disease and connected so many people all over the world. PMG awareness continues to do great things and I'm so happy that I have found a family in them. Thank you so much!
This group has been an amazing sense of support in a very difficult time. I love the tremendous effort in raising awareness about our kids. Thank you for all you do!
My daughter was diagnosed with PMG when she was 9 1/2 months old. That was 16 years ago!
PMG has become more widely diagnosed since then but many people, especially in the medical field still are not familiar with PMG. PMGA has made great strides in helping spread awareness!
For us however, the greatest blessing is PMGA having a convention every 2 years to bring families together to meet and connect! The convention they held in Denver in 2018 was the first time our family met another family in person! We met some awesome families and made some great connections!
It is a real challenge when your child has been diagnosed with a condition you have never heard of and can barely pronouce or spell. The first thing many of us do is turn to Google. This is terrifying. The results are often disheartening and focus on clinical term and not the beautiful people who live with PMG every day. Finding this group and its Facebook support group has given me a safe space to express complex and heartbreaking emotions as well as a resource for the complicated medical decisions many of us caregivers have to make every day. I can honestly say this organization has made my road easier and less lonely to walk down. I am very grateful for them and all the work they do promoting PMG awareness and offering support to our community.
PMGAwareness was the first contact I had after receiving my daughters diagnosis. The family connections that they provided through social media and willingness of other families to connect were tremendously helpful to get through the first part of our journey. They provided information that guided us to find the root cause of our daughters diagnosis (CMV) with weeks to spare before the only way to test for congenital CMV was discarded (newborn screen cards). The support provided to my family encouraged me to become involved in the organization in a deeper capacity. Although I wish this journey on no other parent, I’m so happy that we have an organization to provide families with the right connections and support as we go through this together!
PMG Awareness Organization has been very supportive and informative from the moment we got our daughter’s diagnosis. Our family would be lost without this organization! I am honored to be apart of a caring and loving nonprofit who is dedicated to helping families like mine!
PMG Awarenesss organization has been amazing for our family. We have been able to connect with other families around the world that have someone with PMG! We also got to attend our first PMG conference this last July in Colorado. We talked with lots of families and learned new things from speakers. It's like having another close friend/family that understands what you are going through and we are able to be there for each other through good times and bad!!