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History and Mission of 1p36 Deletion Support & Awareness

1p36 Deletion Support & Awareness (1p36 DSA) was founded in 2009 by parents of children diagnosed with 1p36 Deletion Syndrome in hopes to bring support to families and greater awareness to society regarding this condition. 1p36 Deletion Syndrome is a rare genetic condition that researchers are still learning about.  In fact, it often goes undiagnosed, making planning and care needlessly difficult.  Some characteristics of 1p36 Deletion Syndrome include hypotonia (low muscle tone), hearing loss, seizures, heart defects and intellectual disability. Often when a child is diagnosed with 1p36 deletion syndrome, parents, and even medical professionals, are at a loss for information regarding this syndrome.  Recognizing the need for connection and networking, many dedicated parents have worked on their own to bring 1p36 families together and to raise awareness regarding this condition.  Through Internet message boards, personal websites, blogs and family conferences, families are finally able to connect and share information with each other and with medical professionals. 

Initially conceived in the fall of 2008 and officially incorporated on March 9th, 2009, 1p36 Deletion Support & Awareness grew out of those previous efforts by individual 1p36 parents. The organization currently consists of a five member volunteer Board of Directors comprised entirely of parents of children with 1p36 Deletion Syndrome.  1p36 DSA received 501(c)3 non-profit status on November 22nd, 2009.  This means 1p36 DSA is officially recognized as a federal non-profit organization.  This status will help 1p36 DSA gain the funding needed to accomplish its specific goals as outlined in its strategic plan.

Through a collaborative effort involving the Board and the 1p36 parent community, a mission statement was adopted.  The mission statement states 1p36 DSA’s main overall goals and identifies the individuals the organization serves.

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.

1p36 DSA is governed by the needs of the community of 1p36 families. It exists to bring a brighter future to all individuals with 1p36 Deletion Syndrome.  Mutual respect, cooperation, honesty, inclusiveness, integrity and responsibility make up the values that 1p36 DSA will always adhere to in all its practices.