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1p36 Deletion Support & Awareness

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Health

Mission: To help individuals affected by chromosome 1p36 abnormalities overcome the obstacles they face to be able to lead healthy, happy and productive lives.

Geographic areas served: USA

Programs: Annual 1p36 deletion support & awareness conference for families with an individual with 1p36 deletion syndrome. Doctors, therapists and other speakers provide information to families. It is also an opportunity for the families to learn from each other. Yearly average attendance is 60-75 families, 250-300 individuals.

Community Stories

54 Stories from Volunteers, Donors & Supporters

Client Served

Rating: 5

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!

3 Ken S.

Board Member

Rating: 5

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.

Previous Stories

Board Member

Rating: 5

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.

2

Client Served

Rating: 5

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.

Client Served

Rating: 5

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.

2 chelle7544

Client Served

Rating: 5

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.

Previous Stories
1

Client Served

Rating: 5

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.

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2 Vicie M.

Client Served

Rating: 5

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 .

Previous Stories
1

Volunteer

Rating: 5

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.

3 Karen306

Client Served

Rating: 5

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.

4 altavt0001

General Member of the Public

Rating: 5

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

Previous Stories

Client Served

Rating: 5

My Grandson Sammie Bartlett is 1 P 36! When he was first diagnosed there was very little information out there... This group has been wonderful in getting the ever so important message about 1 p 36 out there They are all so helpful in so many ways. The sharing of information is the key.

1

General Member of the Public

Rating: 5

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 ~

1 Tuna C.

Client Served

Rating: 5

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.

Client Served

Rating: 5

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 .

Client Served

Rating: 5

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!

Melissa167

Client Served

Rating: 5

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.

e-j-s

Client Served

Rating: 5

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

Previous Stories
11

Client Served

Rating: 5

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.

Liz_36

Client Served

Rating: 5

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!

General Member of the Public

Rating: 5

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.

Tammy60

General Member of the Public

Rating: 5

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!!!

Client Served

Rating: 5

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.

Client Served

Rating: 5

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!

Jennifer283

Client Served

Rating: 5

We have a daughter who is 18 and was diagnosed at 14. The amount of knowledge this group of people have about 1p36 far exceeds and our drs and even the internet have. Thank you for connecting all of us and giving us the best chances to help our kids achieve all they were meant to do in life.

Client Served

Rating: 5

Our son was diagnosed at 6 and until we found this family last year web had no clue we what the diagnosis meant or what to do with it. Since joining the family of this organization we feel like a part of the world again and know we are not alone. He had exceled in everything just from getting advice and knowing what services to ask for or what has helped other families. Being able to attend our first conference this year with the help of 1p36dsa was one of our greatest experiences that we can't wait to do again next year

1 Beths mom

Client Served

Rating: 5

My daughter is 47, and we did not get her diagnosis of 1p36 until she had new genetic testing seven years ago. Finding this support group has been incredibly helpful. It has given me better understanding of the cause of her difficulties. For the first time in her life, we've found others like Beth--she has a "family" where she fits in and is understood.

Tamara11

Client Served

Rating: 5

1P36 DSA has been an incredible resource for our family! After my daughter was diagnosed and our doctors had little information to give is we were left to do research on our own. The 1P36 DSA site gave us the information we needed and has been an invaluable resource.

Melissa165

Volunteer

Rating: 5

1p36 DSA is amazing. My daughter was diagnosed around the age of one and I knew nothing about it until finding this organization. I turn to the people in this group for answers, support and friendship. We have a common bond that is indescribable and without this organization my daughters diagnosis wouldbe much harder to understand.

General Member of the Public

Rating: 5

My daughter was diagnosed 7 years ago and I've been in the dark the entire time. We stumbled upon this group after becoming pregnant again and doing some more research on her diagnosis, I feel like I found a whole new world of people who actually understand us! This group has made me feel as though our situation was/is no longer a curse or unfortunate thing. I'm actually proud to be a 1p36 parent now and this organization is solely responsible for that. I am so very thankful I found what I consider to be my extended family!!

Volunteer

Rating: 5

Our son was diagnosed during His stay in the NICU I found this organization immediatly and our closed Facebook Forum. Jaxon is now 2.5 years old, we attended our 1st conference this year and will be at every one going forward ILOVE OUR NEW FAMILY!!

Stephany D.

Client Served

Rating: 5

My son got diagnosed at 20 months old and if knew nothing about 1p36 deletion syndrome! It's so nice to have this family and organization for support!

Client Served

Rating: 5

Our daughter was diagnosed with 1p36 this past year. She is two. Being able rely on this group is one thing that helped us deal with her diagnosis.

Tiffiny W.

Client Served

Rating: 4

My daughter just turned 4 in July, she was diagnosed at about 2 weeks old with 1P36 Deletion Syndrome. We weren't given a lot of information so we started searching the internet and found a 1P36 conference and knew we needed to go. We went and meet a great family and learned about the support group, it has been wonderful. I have learned so much from this group and do feel like we are a big family as we get so much information and support from it. We share each other's joys & challenges, celebrate and encouraged and that makes us a family. So glad I have this support can't imagine getting through this journey without these people.

Destiny S.

Volunteer

Rating: 5

My daughter has 1p36 every since we found out we started looking for site and getting support. 1p36 support groups our, our new family

Marcos R.

Volunteer

Rating: 5

This is my new family. Thaks to all the people in this group I have the real information of my dauther syndrome. I'm very proud of be in the 1p36 family!!!

Cherilyn B.

Client Served

Rating: 4

After my son was diagnosed from his neurologist that he has a rare chromosome disorder, he basically handed me a 3 page detailed handout explaining 1p36 . He advised me to join the 1p36 DSA site for support, which we did immediately! The support families get from this web site is remarkable! Through other families who are dealing with a child who has 1p36 this support group and research that develop from this is absolutely encouraging due to not having much information from the medical field to refer to! I sincerely hope that one day 1p36 will be more commonly understood by neurologist, and others in the medical field.

Sherry17

Volunteer

Rating: 5

1p36 DSA is a God send for us! Our daughter Kaylee was diagnosed with a rare genetic disorder known as 1p36 deletion syndrome at 6 months of age. We wanted to learn everything we could about 1p36 deletion but at the time there was nowhere to turn. There was little information on the internet and no families we could connect with at the time. We felt so alone and isolated. Can you imagine going to your child's pediatrician and he/she doesn't know anything about your child's diagnosis? This was what we had to face every time we encountered a doctor. We had to educate the medical community in our city. It was very frustrating and scary as parents. You can only imagine our excitement when 1p36 DSA came into existence. 1p36 DSA has made a big difference in our lives. We were able to connect with other families and share life experiences. The support group offered us wonderful resources, valuable information, and beautiful memories. Thanks 1p36 DSA for your love, support, and dedication!

2 OMsweetOM

Client Served

Rating: 5

This is an excellent support group that also sources/provides useful info and promotes awareness of the rare disorder 1p36 Deletion Syndrome. The love and sympathy from the members is a positive factor to what is otherwise an unraveling situation. Research surveys and professional papers are shared among the group, an annual conference is held to provide more exposure to experts on the disorder and to enable families to meet each other and share valuable memories. Fundraising is a big part of the group's intention to raise awareness, fund part of the annual conference and to help less fortunate members attend the conference.

1

Client Served

Rating: 5

For eighteen long years we had no diagnosis for our daughter . Generally every doctor we saw just started using the term " developmentally delayed " and we had no real diagnosis or prognosis . One genetic test and the long guessing game was now over . 1p36.33p36.32 . Estimated size 2.6 megabases . The 1p36 Deletion Support & Awareness has given our family a way to touch base with other families all over the world who have children with this rare and often devastating syndrome . So few doctors other than geneticists even know about what it is and how it may relate to their specialty .

Client Served

Rating: 5

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.

General Member of the Public

Rating: 5

1p36 Deletion Support & Awareness, thank you for all your work and dedication to helping the families.

Eileen J.

Client Served

Rating: 5

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.

Phoenix S.

Volunteer

Rating: 5

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.

Carmen R.

General Member of the Public

Rating: 5

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.

1 carriedaggett

Board Member

Rating: 5

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.

8

Volunteer

Rating: 5

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.

8

Board Member

Rating: 5

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.

10

Volunteer

Rating: 5

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.

11

Board Member

Rating: 5

Patients affected by 1p36 Deletions and their families are rare enough that personal interaction and support is limited. To remedy this, I've been able to work with support group members to host annual conferences for families. At these conferences patients and families can interact, support each other, learn from doctors and therapists. The conferences have become an essential part of many group member's summer plans.

10

Board Member

Rating: 5

I am so very proud to be a member of such a loving group. With the help of other members in this close knit community I have learned to provide the best care possible for my daughter, whom is bestowed with a 1p36 deletion. I have learned invaluable "tricks of the trade" in helping my disabled daughter live to her fullest potential. 1p36 Deletion Support & Awareness has provided me with information in the latest technologies; in physical, occupational, speech, & behavioral therapies, communication devices, nutritional needs, information about varies medical procedures ranging from surgeries dealing with tubes in ears to spinal fusion, reviews on medical equipment, & genetic testing. If there was ever a handbook to be printed on how to care for a child/loved one with a disability, 1p36 Deletion Support & Awareness would be able to provide brilliant input.

8

Client Served

Rating: 5

1p36 DSA is a GREAT Nonprofit!!! The annual conference and support received from 1p36 DSA is invaluable to the families it serves.

11

Board Member

Rating: 5

1p36 Deletion Syndrome is a chromosome disorder that is characterized by moderate to severe intellectual disability, delayed growth, limited speech ability and distinct facial features. It is estimated that 1p36 Deletion Syndrome occurs in one in every 5,000 to 10,000 births though many individuals still go undiagnosed. 1p36 Deletion Syndrome is the most common chromosome deletion. Many parents when given their child's diagnosis do not receive more than the location of the deletion and a lesson on chromosomes & genetics. Parents feel alone and overwhelmed. In 2009, I created the 1p36 Deletion Support & Awareness website so parents, caregivers and the medical community could seek information about 1p36 Deletion Syndrome. What I did not know was the personal reward I would receive from answering the website emails. It is an amazing experience to be able to communicate with others who are going through the same experiences and introduce them to a welcoming group of people who support each other through the accomplishments and the difficult times.