The National Association for Down Syndrome, or NADS, is an organization that was founded in 1960 by Kathryn McGee in Chicago, Illinois, to support people with Down syndrome and their families in improving their quality of life. Originally named the Mongoloid Developmental Council, NADS is one of the oldest organizations serving people with Down syndrome and their families in the United States. According to NADS, Down syndrome is a genetic condition that occurs in one in every seven hundred ninety-two people and that causes delays in physical and intellectual development. Members of NADS work to provide information, resources, and access to services and programs for families with Down syndrome, educate the public, address social policy issues and challenges, and facilitate advocacy efforts within the Down syndrome community. For over sixty years, NADS has helped support individuals born with Down syndrome, one of the most common genetic disorders, in the US to find acceptance, develop their capabilities, and work toward independence.
Smile Train is a non-profit organization that Brian Mullaney and Charles Wang founded in 1999 in New York City, New York, that provides resources and trains medical staff in over ninety countries to give free surgeries to children in need of cleft repair. Clefts are birth defects that affect one in 700 children all over the world. They occur when the roof of the mouth, or palate, the lip, or both have a gap or split, because the tissues and bones did not fuse properly during fetal development. Surgeons typically repair clefts within the first year of life because clefts can often cause problems with eating, speaking, breathing, and hearing. Beyond providing cleft surgeries, Smile Train also supports the needs of children with clefts with services such as speech therapy, dental care, and psychological and nutritional support. Smile Train helps provide better access to cleft surgery and care for thousands of children worldwide, which improves the quality of life for people born with the developmental condition.
In May 2017, Alice Lee, Fiona E. Gibbon, and Kimberley Spivey published “Children’s Attitudes Toward Peers With Unintelligible Speech Associated With Cleft Lip and/or Palate,” hereafter “Children’s Attitudes,” in The Cleft Palate Craniofacial Journal. About one in every 1600 babies in the US is born with both cleft lip and cleft palate, which are birth defects that can also occur independently. Those birth defects occur when the lip or roof of the mouth, also called the palate, do not fully develop during pregnancy. The condition often results in speech difficulties, even after children undergo surgery to repair their cleft palate. “Children’s Attitudes” was one of the first articles investigating how different age groups of children judged their peers with speech difficulties who had undergone a cleft palate repair surgery. The authors found that peers’ attitudes towards speech problems tended to be negative. “Children’s Attitudes” concludes that judgment from peers can negatively affect children with speech difficulties and argues that increased public awareness of speech difficulties may reduce barriers that children with those difficulties face.
On 1 February 1998, David T. Helm, Sara Miranda, and Naomi Angoff Chedd published “Prenatal Diagnosis of Down Syndrome: Mothers’ Reflections on Supports Needed From Diagnosis to Birth,” hereafter “Mothers’ Reflections,” in the journal Mental Retardation. In 2007, Mental Retardation changed its name to Intellectual and Developmental Disabilities. Down syndrome is the result of an extra copy or partial copy of chromosome 21, also known as Trisomy 21. It is characterized by traits such as intellectual disabilities, differing facial features, and a high risk for heart disease. In the study, the authors interviewed ten mothers, all of whom had elected to continue with their pregnancy after a prenatal diagnosis of Down syndrome, about their experiences with health care professionals. The article provides suggestions for health care professionals, such as providing up-to-date materials and unbiased information and avoiding judgmental language, so that when mothers receive a prenatal diagnosis of a developmental disability, they are prepared and supported.
Pierre Franco was a surgeon in Europe in the sixteenth century who developed a variety of surgical procedures, including some to repair hernias, cleft lips, and bladder stones. A hernia occurs when an internal organ protrudes through a weak spot in a muscle or tissue, typically in the abdomen, which can cause severe pain, nausea, and vomiting. A cleft lip is a congenital abnormality where the tissues of the upper lip and roof of the mouth do not form properly as the fetus develops during pregnancy, causing problems with eating and speaking. Bladder stones are hard masses of minerals that build up from a person’s urine and form in their bladder, often causing pain or bleeding during urination. Franco described the congenital origin of the cleft lip and was one of the first to develop a repairing procedure for hernias without the removal of genitals. As of 2024, surgeons have continued to innovate upon many of Franco’s surgical procedures, including those to repair hernias and cleft lips, to help children born with congenital defects and other patients in need of surgery.