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 .