I can't say enough about this non profit organization. When our grandson was born with this syndrome we could not get any answers. It was not very well known by the doctors. We searched the internet for any help we could get and came upon this group. They are more like family to us and have helped us through a lot of hard times. We went from being scared and feeling all alone in this journey to finding a whole "family"to travel this road with. Every year in a different state they have a conference to bring families together for support. Doctors and guest speakers are there to help families learn more about the syndrome and it has grown so much. When your own doctors don't know what to do all we have to do is reach out to this group and all the families that understand what is going on and usually you can find the answers to take back to your doctor and get the help you need. We have been truly blessed and I can't say enough about how much they do for everyone!
I have been involved with 1p36 Deletion Support & Awareness since its inception. I also have a son with the syndrome and I have seen first hand the wonderful work that this organization has done. There is still much more to do but I know that 1p36 DSA is working hard to help support families and spreading awareness of this 1p36 Deletion Syndrome.
I have been involved with 1p36 Deletion Support & Awareness since its inception. Having a son with 1p36 Deletion Syndrome is tough on our family and it is nice to be able to feel supported by the organization. There is not another charity I am aware of that does more for those with 1p36 Deletion syndrome and their families.
This organization is the only place families can get good, useable information on this genetic syndrome to present to physicians and friends/family. They also offer a parent-to-parent forum where families can ask questions of each other, celebrate their children, or just vent. I appreciate the work this organization has put into making families feel connected and informed.
I would be lost without the support that our family has received from this group! My daughter was diagnosed 3 years ago, and it the journey has been an emotional roller coaster. Any time I have a question or I am curious about something related to 1p36, I have been able to bring it to the group and they have provided insight, love, and support. It's so much easier knowing that we aren't in this alone.
We have attended 1P36DSA conferences and they have been amazing. They are well organized. They have informative speakers, and they bring a community of people together that share a special bond. They have offered families a chance to meet other people with their children's disability. It is one of the best experiences I have ever had. They are wonderful! Can't say enough good things.
This organization is a group of parents that are spreading info to health care providers and teachers about 1p36 deletion syndrome. This is extremly important because our kids can be misdiagnosed with illnesses that stem from the disability. The doctors will have the proper education to help new parents understand the disability. Provide therapists with the information so the children can live up to their fullest potential. Allow teachers to teach with the appropriate techniques. To spread awareness to open much needed doors.
I have a 11 year old child with 1p36. At the time I adopted him I did not realize I was getting a wonderful great big family along with him. The 1p36 group is always there for me it my joy and in my fear and sadness. It is a great place to get advice and to get input in decision making. As a single parent I don't have anyone to throw ideas around with so I go to this group. I am never alone. There is much information that people in this group know about the syndrome that is not in any publications yet so in my opinion this group is made up of the experts .
This group has helped me for many years. I adopted a child with 1p36 and knew nothing at all about it. Our geneticist also was not familiar with it and recommended I join an on line support group. I have learned all I know about the syndrome from this group and , as a group we are learning new things about the syndrome every day. Last year I was blessed to host the annual conference which is a wonderful time of us all gathering together to share a laugh and a tear. and to not be different for a few days.
This is the best group of people for support I could ever ask for. I have two children with 1 P 36 deletion syndrome. And this organization is my family.
Wonderful organization! Genuine people with lots of first hand knowledge and what happens in the world of 1 p 36 deletion syndrome Honest, caring and refreshing. My grandson is a member of this elite group and now we have so many new relationships because of this
When my grandson was born we were very scared and had no knowledge of the syndrome and we were not given any info about it. After surfing the web we found this 1p36 group and finally someone had some answers for us. We went from being scared and feeling all alone in this journey to finding a whole "family" to travel this road with. We have been truly blessed with the people we have met and I couldn't say enough about this group. If there was a button to click 10+ stars I would. Thank you from the bottom of my heart for all that you do! Donna ~ Nana to Jason ~
When my daughter diagnosed 1p36 deletion syndrome, I was so unaware what to do. Doctors in here were not aware of it as well. So with the help of this site I could see what is needed to be done. Thanks alot to all those sharing info on this subject and helping us to cope with it.
My granddaughter was born with 1p36 deletion syndrome ( a genetic disorder) that this wonderful group is trying to educate the public and our politicians about. These kids need the same help that is offered to those children born with Down Syndrome , the issues are very similar and yet in most cases worse for the 1P36 kids .
My daughter is now 4 years old, she was diagnosed with 1P36 Deletion at about 2 weeks old. Hearing that something is wrong with your child and that they will not lead a normal life is not something any parent wants to hear. I remember being completly devasted and had never heard of this syndrome. Our genetics doctor was able to shed some light on it but able to give us any detailed information. My husband went online and was researching it when he came upon information about a 1P36 Deletion Conference, we knew we had to go. We went there and met amazing people and families. To hear the stories of some of the things they had went through, I realized they were strong people and I had a lot to learn from them. There is now a 1P36 FaceBook group and it is wonderful, the word about 1P36 is getting out there and new people are joining our family it seems like daily. We have families from not just all over the USA but all over the world and evern though we have never met many of them face to face and may not live in the same country we are all still family. We all learn from each other, help each other, and cry with each other. That is what family is all about. This family makes dealing with a 1P36 Deletion child bearable and I couldn't imagine going through this journey without them. The people who take care of the things of this organization are amazing wonderful and are doing a great job!
This group is not only a support group to turn to when you are needing information regarding 1p36, a group to share when you see something different with your child and need to find out how normal it is within individuals with this diagnosis. But they become a family from the moment you join to the moment you are able to start meeting some face to face. You go to conference and come home with some of the best friends and new family members. When one family is in pain we all come together as a group for each other. If a child gains their wings we all feel it. This is a group I gladly call my family.
I have been a Family Member of the 1p36 Family since 2005. My daughter was diagnosed when there was not much info on the Chromosome Deletion. I tried to find information on the internet but I was no Doctor. I found a Yahoo group that introduced me to a couple of members. I was alone and did not know where to turn to. In the past 8 years I have found Family that understood what I went through. My daughter Shelby passed away December 24th, 2012. I have never seen an out pour of Love, Sympathy and understanding of the loss of Shelby Girl. I knew that every word spoken was true and was heart felt because we are a FAMILY. You can never take away the Special Bond we all have for each other. When you can walk into a room filled with people that know exactly how you feel it is a feeling you can never replace. I am a 1p36 MOM and am very proud of all my FAMILY XO
I have a duaghter who was diagnosed when she was 9 months old and she is now 5. My dauhgter is a Fighter like many of the families who are being helped by 1p36 Deletion Support & Awareness.
As young parents to a child diagnosed with 1p36 deletion, I can honestly say we have never been more afraid about anything. Especially when your child's pediatrician doesn't have any knowledge or answers to offer you. After becoming a part of this wonderful group we no longer live in fear for our son. I've never seen so many loving and supportive people before in my life! They're all there to help everyone through any situation and we are forever grateful for every one of them!
My son was diagnosed at about a month old and it took me quite a while to digest the information. I cried for the whole day because it was like all my dreams that I had for him while I was pregnant just got smashed. But after connecting with other families I have came to realize that even though he won't do what most kids do, he enjoys life and is happy.
This non profit group means the world to me! I have a 4 year with 1p36 Deletion Syndrome and this group has brought me support, love, guidance, and HOPE! LOVE my 1p36 Family!!!
When your family is told that a child has s very serious condition, your world falls silent, yet full of questions. What does this mean for the child? What does this mean to me? What will my kid be able to do? Not do? Will my kid die an early death.
Our fear gripped us, but this group, 1p36 DSA, calmed our fears. Through the group, we were able to understand our daughter's condition and what care she needed to have a high quality life. Through the group, we were also introduced to a number of other families, friends, and children who also have the condition. Their warmth, openness, and caring has made all the difference in the world to our family and, especially, our child.
I have a 5 year old son with 1p36 deletion syndrome, diagnosed at 1 month old. I've never felt more at home than I do with these families.. They are compassionate, loving and always ready to lend an ear. They are there to share in your accomplishments no matter how small they may be. I couldn't imagine calling anyone else my family!