1p36 Deletion Support & Awareness

1p36 Deletion Syndrome (pronounced one p three six) is a syndrome that affects thousands of children, teens and adults worldwide. Its prevalence is estimated to be 1 in 5,000-10,000 births. What is 1p36 Deletion Syndrome you ask? It is a genetic anomaly where a small amount of genetic material is missing (deleted) at the tip of the short arm (p) of chromosome 1. This missing piece of chromosome can result in a variety of medical/physical issues, some examples are:

~ Low muscle tone

~ Seizure disorder

~ Growth and/or feeding problems

~ Developmental & intellectual disabilities

~ Cardiomyopathy & thyroid disease

~ Hearing loss

~ Vision or eye problems

~ Behavior problems

~ Characteristic physical features (those diagnosed with 1p36DS tend to have similar facial features)

1p36 Deletion Support & Awareness (1p36 DSA) was founded by parents of children diagnosed with 1p36 Deletion Syndrome in hopes to bring support to families and greater awareness to society regarding this condition. Our mission is to help individuals affected by chromosome 1p36 abnormalities overcome the obstacles they face to be able to lead healthy, happy and productive lives. We do this by providing support and education to their families and increasing awareness of chromosome 1p36 abnormalities in the public and medical community. One of the major ways we accomplish this mission is by putting on the 1p36 DSA Annual Conference every summer.

The 1p36 DSA annual conference is the only conference of its kind where parents of those with 1p36 Deletion syndrome and medical professionals with an interest in 1p36 Deletion Syndrome come together from all over the world, to learn the most current recommended care and advocacy strategies and hear first-hand the latest in research. Even though many resources today can be accessed online, nothing can replace the experience of meeting face-to-face with experts and spending time developing lasting relationships with other parents and attendees. Some families find our organization early in their journey, some much further down the road, but all attendees of the 1p36 DSA annual conference will tell you it is an experience they will never forget. Here is an excerpt from a parent who wrote about her experience at her first conference:

“My experience was emotional, scary, and eye opening. The first hour I think I cried six times. From sadness and happiness. Sadness because of the babies and children we lost. Happiness because of the overwhelming feeling of being with people who actually get it. They know how you feel. They have been there or are currently there. They understand the pain, stress, sleepless nights, the constant worry etc. It made me feel relieved. We all have family and friends who sympathize or say they understand. But we all know that's not always the case. You only understand if you’re living it.

I encourage all 1p36 parents, grandparents, all family and friends to attend a conference if they are able. It is amazing, the information and new friends you can make. It's a big family. A support system that all of us need. This is a long road and a rough ride. But together we can help our kids overcome and be the best they can be. They are blessings and should be treated as such.”

This year’s conference will be held at The Sheraton Detroit Novi in Michigan August 3rd-5th, 2023 and we need your help to make this conference a success. Our goal is to raise $25,000 to help offset the cost of putting on the conference. We keep our registration fees low, and your donation will help us cover the costs of:

Please help us make a difference in the lives of those with 1p36 Deletion Syndrome and their families by donating today to 1p36 Deletion Support & Awareness.

Thank you for your support. To learn more please visit 1p36DSA.org