1p36 Deletion Support & Awareness
My 3 year old daughter has 1p36 deletion syndrome. This syndrome has many devastating effects for your child including mental retardation, inability to walk or talk, hearing loss, heart problems, and seizures. The technology to identify the syndrome has really only been around in the past 10 years or so and used regularly in the past 5 years. So more and more children are getting diagnosed with this each year. The 1p36 Deletion Support and Awareness group has been a wonderful place to turn for information. Not much has been studied about this syndrome yet and there are no other children with it who live anywhere near us. The 1p36 Deletion Support and Awareness Group has provided me with a lifeline of support and information that I could not get anywhere else.
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How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2011
1p36 Deletion Support & Awareness, thank you for all your work and dedication to helping the families.
The Great!
I've personally experienced the results of this organization in...
Seeing how it has supported families
Ways to make it better...
If I had to make changes to this organization, I would...
Have information about 1p36 Deletion Support & Awareness in every doctor's office and insurance co. website
I am a member of a very special group named 1P36 Deletion Support and Awareness because my daughter has the deletion. She was not diagnosed until 8 years of age. I'm hoping that increased awareness will get children diagnosed sooner and more accurately. Although my child is considered mildly affected this group has been there to understand our daily challenges. This group has given us a wealth of knowledge and support. We feel we are finally understood and completely accepted.
The Great!
I've personally experienced the results of this organization in...
getting together with several members and meeting various other children that have the deletion. Learning and understanding by comparison and others experiences.
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How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2011
How did you find this group?
Through the YAHOO group.
What, if any, change in your life has this group encouraged?
My life has changed because I no longer feel isolated or different.
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.
The Great!
I've personally experienced the results of this organization in...
Every 1p family benefits
Ways to make it better...
If I had to make changes to this organization, I would...
As this non profit grows I would love to see everything they dream of come true.
1p36 deletion syndrome is a relatively new diagnosis. This organization is providing knowledge to the medical community and others about this disability. It is crucial for our children to get more help. The more information out there the better chance our children have to reach their fullest potential. They also have provided the opportunities for other 1p families to meet.
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The Great!
I've personally experienced the results of this organization in...
Finding other families and gaining more knowledge about my son's disability.
Ways to make it better...
If I had to make changes to this organization, I would...
I think the only thing I would like to see is the non profit grow and be able to help families even more.
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What I've enjoyed the most about my experience with this nonprofit is...
Knowing other families in my situation.
The kinds of staff and volunteers that I met were...
wonderful, amazing people
If this organization had 10 million bucks, it could...
Help a population of families that have been forgotten
Ways to make it better...
no complaints
In my opinion, the biggest challenges facing this organization are...
growth. I want to see them grow into something amazing.
How frequently have you been involved with the organization?
About every six months
When was your last experience with this nonprofit?
2010
As an active member and participant of the 1p36 Deletion Support & Awareness group, we continue to learn on a daily basis thanks to knowledge and sharing that is fostered by them. Participation in their conferences and events has encouraged my family to be compassionate in life in general and to never lose hope because of others inabilities to be accepting. They have provided us with ideas, information, inspiration-on those rough days, and support that uplifts one's very being.
The Great!
I've personally experienced the results of this organization in...
General asects of everyday life...
Ways to make it better...
If I had to make changes to this organization, I would...
Continue it's wonderful growth and outreach to families, the medical community, and the general public.
I am a member of the 1p36 Deletion Support & Awareness group. This is an excellent source of information. As many doctors are not familiar with this diagnosis. I am grandma of Alisha Rassi who is 8 yrs old with 1p36.3. She was diagnoise at exactly 14 months. As far as I am concern and per doctors info she is the only case (till date) in Puerto Rico with this medical condition. I have found that many of the parents in this group are more family with this condition than medical doctors. I count it a blessing to belong to this group. We are more than friends but a family.
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The Great!
I've personally experienced the results of this organization in...
Learning each day more about this diagnosis. Speak to Alisha's mother and keep her informed since she does not speak English. I also go to all her medical appointments and take all the information regarding 1p36 since like I mentioned before this condition is not known here in Puerto Ciro.
Ways to make it better...
If I had to make changes to this organization, I would...
I would not make any changes since I feel the moderator of the group is doing an excellent job.
Being a parent to a 1p36 child brings a multitude of challenges that the parent of a typical child never has to consider. It can mean lengthy hospital stays, surgeries for heart, digestive or orthopedic complications, specialist appointments and more specialist appointments, a variety of medicines mulitple times a day, pediatric therapists to visit or that that visit you, education plans and meetings, specialized equipment for seating, mobility and sleeping, 24/7 seizure watch, oxygen monitors, feeding tubes, and diapers for a child well beyond potty training age. A parent of a 1p36 child experiences all or some of these things. The hardship is compounded when parents can't find support or the resources they need or simply connect with another person who relates with what they are going through. My daughter Kate, now 7, was diagnosed with 1p36 Deletion Syndrome at 18 months of age. Even before getting the diagnosis, we knew that she had some sort of genetic disorder due to her significant health and development issues but the doctors could not put their finger on it. Once we finally did have the diagnosis, we found that there was no-where to turn for support and guidence regarding 1p36 Deletion Syndrome Six months after getting the diagnosis, I finally happened upon a Yahoo! message board for 1p36 parents and I was so relieved to finally find someone who shared the same experiences as my family. It was because of the parents who started that message board (and others who organized our first conference or designed special 1p36 web sites) that 1p36 Deletion Syndrome Support & Awareness exists. It is essential that parents and caregivers of 1p36 children are able to connect with others and that the most recent and relevent information regarding the syndrome is available to them and to medical providers. Early diagnosis means that doctors and parents have new insight into a child's health issues. That insight can mean better outcomes to the most dangerous of 1p36 Deletion Syndrome's health complications. I believe strongly in the mission of this organization and know that with your help, we can make sure that all children with 1p36 Deletion Syndrome are diagnosed early and that their families get the help they need.
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The Great!
I've personally experienced the results of this organization in...
the relief I felt that my family is not alone. Having a child with special needs can be very alienating. The support from your family and friends is helpful but finding other parents dealing with same diagnosis is comforting and enlightening.
Ways to make it better...
If I had to make changes to this organization, I would...
increase funding and scope of operations. In order to reach the goal of providing support & education to all 1p36 families and to educate the medical community so that no child goes undiagnosed, growth and funding is essential. We can make a difference!
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What I've enjoyed the most about my experience with this nonprofit is...
meeting 1p36 families and their beautiful children. It is an amazing thing to have that connection. A 1p36 DSA conference is like a giant family reunion with a bunch of people you've never met. Imagine the relief when you know you are not alone anymore
The kinds of staff and volunteers that I met were...
so dedicated to the mission of 1p36 Deletion Support & Awareness. Their desire to truly make a difference for these children and their families shows in their enthusiasm and hard work.
If this organization had 10 million bucks, it could...
insure that no 1p36 child goes undiagnosed and that all 1p36 families have access to information and support.
Ways to make it better...
My experience with this organization and the people involved could not be any better but the future holds even better experiences!
In my opinion, the biggest challenges facing this organization are...
gaining the funding needed to support the organization's future programs.
How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
The 1p36 organization is a fantastic network of families. This network not only provides support and education..but more importantly provides HOPE. This is especially important for newly diagnosed families. The annual conference, quarterly newsletters and yahoo support group are wonderful tools to help families with their journey of having a child with special needs.
The Great!
I've personally experienced the results of this organization in...
My everyday life. I look forward to reading about other 1p36 children and their parents and how they deal with certain situations. It is therepeutic to connect to those who understand my same situation as a parent.
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How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
My wife and I have a 4 yr old son with 1p36 Deletion Syndrome. 1p36 Deletion Support & Awareness has been wonderful in providing both informational and emotional support. It is great to know that you have a family that you can talk to that can truly understand the things you are going through.
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How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
My granddaughter has 1p36 Deletion Syndrome. When we first found out, we were devastated, she was one of very few children at the time diagnosed with this chromosomal disorder, and information was limited. They told use she may or may not progress. Today through 1p36 Deletion Support and Awareness Group, we communicate experiences about daily life with our little and some not so little Angels. Learning that we are not alone and that each child/individual with this disorder is different helped us to better understand our little one. We learn through the exchange of information and support we provide to each other. We have an annual conference and invite speakers that are knowledgeable on the latest developments on the research front, teaching tools, for example, this year we will have a speaker that will present information about signing and a workshops for the siblings of children with 1p36. Although 1p36 Deletion Awareness and Support recently received its non-profit status, we have families from around the world that have been communicating with each other for some time. Posting our joys, sorrows, frustrations, and even anger at times, has been a tremendous help to all of our families. We learn from each other, not sure of why your child is behaving in a certain manner, post it and you will get information from a parent with a child that has experienced a similar situation. Concerned about, for example your child going through puberty, someone with knowledge will answer your questions and give you suggestions. As a volunteer, education is essential to understanding our children, each child is different, each child learns in a different manner and the ability to share personal experiences has enriched our family beyond words. Going forward, I would like to see this organization continue to provide education and support for families as well as communities and to learn more about research advances for this genetic disorder.
The Great!
I've personally experienced the results of this organization in...
The support I have received through this organization includes personal and family support. This organization allows us to communication concerns, issues and experiences and to understand that we are not alone.
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How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010