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The Global Down's Syndrome Foundation (GDSF)

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The Global Down's Syndrome Foundation (GDSF)

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The Global Down's Syndrome Foundation is a public non-profit organization dedicated to ameliorating the lives of people with Down's Syndrome by providing medical care, education, and advocacy.

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There are four national Down syndrome organizations in the United States: Global Down Syndrome Foundation, National Down Syndrome Congress, National Down Syndrome Society, and Down Syndrome Affiliates in Action.

Global Down Syndrome Foundation

The Global Down Syndrome Foundation is a public non-profit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through Research, Medical care, Education and Advocacy. Formally established in 2009, the Foundation's primary focus is to support the Linda Crnic Institute for Down Syndrome, the first academic home in the United States committed solely to research and medical care for people with Down syndrome. Since Down syndrome is the least-funded genetic condition in the United States, fundraising and government advocacy to correct the alarming disparity of national funding for people with Down syndrome is a major goal.

National Down Syndrome Congress

The National Down Syndrome Congress ("NDSC") provides information, advocacy and support for all aspects of the lives of individuals with Down syndrome. The organization was formed in 1973 and works to ensure equal rights and opportunities for people with Down syndrome, promotes education, provides public policy leadership, and encourages research. Every year, the NDSC organizes a national convention with approximately 2,500 to 3,000 attendees. The convention attracts nationally and internationally renowned Down syndrome experts and hundreds of families. A key focus of the NDSC is developing self-advocate leadership through their programs and their national awareness campaign "We're More Alike Than Different." NDSC has more than 250 affiliates, mostly comprised of local Down syndrome organizations.
To learn more about NDSC please visit http://www.ndsccenter.org
National Down Syndrome Society

Since 1979, the National Down Syndrome Society ("NDSS") has worked to promote the value, acceptance and inclusion of people with Down syndrome. NDSS has about 350 affiliates nationwide. The NDSS National Policy Center works with Congress and federal agencies to protect the rights of people with Down syndrome, and educates individuals to advocate on local, state and national levels. The largest NDSS public awareness campaign is My Great Story, which ignites a new way of thinking about people with Down syndrome by sharing stories written by and about them. The National Buddy Walk Program includes over 250 walks. NDSS envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities.
To learn more about NDSS please visit http://www.ndss.org/
Down Syndrome Affiliates in Action

Down Syndrome Affiliates in Action (DSAIA) is a national trade association composed of 70 affiliates mostly made up of local Down syndrome organizations from across the United States. DSAIA's purpose is to serve their affiliates through collaboration, resource sharing, and networking. Benefits of membership include access to a resource repository, education and training webinars, brokered discount programs and discounted registration at their annual conference. DSAIA's annual conference provides a valuable forum for local Down syndrome organizations to share programs and best practices with other local Down syndrome organizations.
To learn more about DSAIA please visit http://www.dsaia.org/ Please note there is an organization called the "National Association for Down Syndrome" and although it offers broad-based information, the organization offers support and advocacy specifically to those in the Chicago area. You can learn more about this organization under the "Local Down Syndrome Organizations - Illinois" section of this website.

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National Down Syndrome Organizations in the U.S. | Global Down Syndrome Foundation

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There are four national Down syndrome organizations in the United States: Global Down Syndrome Foundation, National Down Syndrome Congress, National Down Syndrome Society, and Down Syndrome Affiliates in Action. Global Down Syndrome Foundation The Global Down Syndrome Foundation is a publi

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Since 2011, the National Institutes of Health (NIH) joined with different organizations to form the Down's Syndrome Consortium. Their goal is to build and encourage ongoing research about Down's Syndrome, like causes, treatment, and prevention.

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In 2011, the National Institutes of Health (NIH) joined with governmental and private organizations interested in Down syndrome to form the Down Syndrome Consortium. The goal of the Consortium, which is led by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), is to encourage the exchange of information about Down syndrome research and healthcare among Consortium members.

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NICHD is pleased to be co-leading the INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) project, an NIH-wide initiative that launched in June 2018 in support of a congressional directive. The project aims to understand critical health and quality-of-life needs for individuals with Down syndrome, with the aim of yielding scientific discoveries that will improve the health, well-being, and neurodevelopment of individuals with Down syndrome, as well as inform our thinking about common diseases they share with individuals who do not have Down syndrome. The INCLUDE project will investigate individuals' risk and resilience for conditions that affect both people with Down syndrome and the general population, such as Alzheimer's disease/dementia, autism, cataracts, celiac disease, congenital heart disease, and diabetes.

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On the podcast episode "Research at NIH," Melissa Parisi, M.D., Ph.D., chief of NICHD's Intellectual and Developmental Disabilities Branch, and Lisa Kaeser, J.D., director of NICHD's Office of Legislation and Public Policy, discuss the DS-Connect® registry and the INCLUDE project with Dr. Kishore Vellody, director of the Down Syndrome Center of Western Pennsylvania. Dr. Parisi serves as the chair of the Consortium and Ms. Kaeser is the executive secretary.

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In 2011, the National Institutes of Health (NIH) joined with governmental and private organizations interested in Down syndrome to form the Down Syndrome Consortium. The goal of the Consortium, which is led by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), is to encourage the exchange of information about Down syndrome research and healthcare among Consortium members.

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Treatment varies with the individual. There is no one, standard treatment. The disorder itself cannot be cured, but it can be helped.

People with Down's Syndrome can have special education, vocal therapists, physical therapists, special doctors, and tools to help with certain symptoms, like hearing aids and bands to help with movement.

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There is no single, standard treatment for Down syndrome. Treatments are based on each individual's physical and intellectual needs as well as his or her personal strengths and limitations. People with Down syndrome can receive proper care while living at home and in the community.

A child with Down syndrome likely will receive care from a team of health professionals, including, but not limited to, physicians, special educators, speech therapists, occupational therapists, physical therapists, and social workers. All professionals who interact with children with Down syndrome should provide stimulation and encouragement.

People with Down syndrome are at a greater risk for a number of health problems and conditions than are those who do not have Down syndrome. Many of these associated conditions may require immediate care right after birth, occasional treatment throughout childhood and adolescence, or long-term treatments throughout life. For example, an infant with Down syndrome may need surgery a few days after birth to correct a heart defect; or a person with Down syndrome may have digestive problems that require a lifelong special diet. For more information, visit the What conditions or disorders are commonly associated with it? section.

Children, teens, and adults with Down syndrome also need the same regular medical care as those without the condition, from well-baby visits and routine vaccinations as infants to reproductive counseling and cardiovascular care later in life. Like other people, they also benefit from regular physical activity and social activities.

Early Intervention and Educational Therapy

"Early intervention" refers to a range of specialized programs and resources that professionals provide to very young children with Down syndrome and their families. These professionals may include special educators, speech therapists, occupational therapists, physical therapists, and social workers.

Research indicates that early intervention improves outcomes for children with Down syndrome. This assistance can begin shortly after birth and often continues until a child reaches age 3. After that age, most children receive interventions and treatment through their local school district.

Most children with Down syndrome are eligible for free, appropriate public education under federal law. Public Law 105-17 (2004): The Individuals with Disabilities Education Act ( IDEA) makes it possible for children with disabilities to get free educational services and devices to help them learn as much as they can. Each child is entitled to these services from birth through the end of high school, or until age 21, whichever comes first. Most early intervention programs fall under this legislation.

The National Early Childhood Technical Assistance Center, run by the U.S. Department of Education, provides information and resources for parents and families looking for early intervention programs. Visit https://ectacenter.org/ for more information. Additional early intervention resources are available at http://day2dayparenting.com/category/child-development-2/special-needs-diagnoses/ , and at https://www.familyvoices.org .

The law also states that each child must be taught in the least restrictive environment that is appropriate. This statement does not mean that each child will be placed in a regular classroom. Instead, educators will work to provide an environment that best fits the child's needs and skills.

The following information may be helpful for those considering educational assistance programs for a child with Down syndrome:

The child must have certain cognitive or learning deficits to be eligible for free special education programs. Parents can contact a local school principal or special education coordinator to learn how to have a child examined to see if he or she qualifies for services under the IDEA.

If a child qualifies for special services, a team of people will work together to design an Individualized Educational Plan (IEP) for the child. The team may include parents or caregivers, teachers, a school psychologist, and other specialists in child development or education. The IEP includes specific learning goals for that child, based on his or her needs and capabilities. The team also decides how best to carry out the IEP.

Children with Down syndrome may attend a school for children with special needs. Parents may have a choice between a school where most of the children do not have disabilities and one for children with special needs. Educators and health care providers can help families with the decision about what environment is best. Integration into a regular school has become much more common in recent decades, and IDEA requires that public schools work to maximize a child's access to typical learning experiences and interactions.

The U.S. Department of Education funds the Parent Center Network, which provides resources, contacts, and assistance for parents and families trying to navigate special education programs. Visit http://www.parentcenterhub.org/ for more information.

Treatment Therapies

A variety of therapies can be used in early intervention programs and throughout a person's life to promote the greatest possible development, independence, and productivity. Some of these therapies are listed below.

Physical therapy includes activities and exercises that help build motor skills, increase muscle strength, and improve posture and balance.

Physical therapy is important, especially early in a child's life, because physical abilities lay the foundation for other skills. The ability to turn over, crawl, and reach helps infants learn about the world around them and how to interact with it.

A physical therapist also can help a child with Down syndrome compensate for physical challenges, such as low muscle tone, in ways that avoid long-term problems. For example, a physical therapist might help a child establish an efficient walking pattern, rather than one that might lead to foot pain.

Speech-language therapy can help children with Down syndrome improve their communication skills and use language more effectively.

Children with Down syndrome often learn to speak later than their peers. A speech-language therapist can help them develop the early skills necessary for communication, such as imitating sounds. The therapist also may help an infant breastfeed because breastfeeding can strengthen muscles that are used for speech.

In many cases, children with Down syndrome understand language and want to communicate before they can speak. A speech-language therapist can help a child use alternate means of communication, such as sign language and pictures, until he or she learns to speak.

Learning to communicate is an ongoing process, so a person with Down syndrome also may benefit from speech and language therapy in school as well as later in life. The therapist may help with conversation skills, pronunciation skills, understanding what is read (called comprehension), and learning and remembering words.

Occupational therapy helps find ways to adjust everyday tasks and conditions to match a person's needs and abilities.

This type of therapy teaches self-care skills such as eating, getting dressed, writing, and using a computer.

An occupational therapist might offer special tools that can help improve everyday functioning, such as a pencil that is easier to grip.

At the high school level, an occupational therapist could help teenagers identify jobs, careers, or skills that match their interests and strengths.

Emotional and behavioral therapies work to find useful responses to both desirable and undesirable behaviors. Children with Down syndrome may become frustrated because of difficulty communicating, may develop compulsive behaviors, and may have Attention Deficit Hyperactivity Disorder and other mental health issues. These types of therapists try to understand why a child is acting out, create ways and strategies for avoiding or preventing these situations from occurring, and teach better or more positive ways to respond to situations.

A psychologist, counselor, or other mental health professional can help a child deal with emotions and build coping and interpersonal skills.

The changes in hormone levels that adolescents experience during puberty can cause them to become more aggressive. Behavioral therapists can help teenagers recognize their intense emotions and teach them healthy ways to reach a feeling of calmness.

Parents may also benefit from guidance on how to help a child with Down syndrome manage day-to-day challenges and reach his or her full potential.

Drugs and Supplements

Some people with Down syndrome take amino acid supplements or drugs that affect their brain activity. However, many of the recent clinical trials of these treatments were poorly controlled and revealed adverse effects from these treatments. Since then, newer psychoactive drugs that are much more specific have been developed. No controlled clinical studies of these medications for Down syndrome have demonstrated their safety and efficacy, however.

Many studies of drugs to treat symptoms of dementia in Down syndrome have included only a few participants. The results of these studies have not shown clear benefits of these drugs, either. Similarly, studies of antioxidants for dementia in Down syndrome have shown that these supplements are safe, but not effective.

Assistive Devices

More and more often, interventions for children with Down syndrome involve assistive devices-any type of material, equipment, tool, or technology that enhances learning or makes tasks easier to complete. Examples include amplification devices for hearing problems, bands that help with movement, special pencils to make writing easier, touchscreen computers, and computers with large-letter keyboards.

DS-Connect®: The Down Syndrome Registry

Parents and families of children with Down syndrome can connect with other families and people with Down syndrome from around the world to learn more and share information. The NICHD-led DS-Connect® is a safe and secure registry to help families and researchers identify similarities and differences in the symptoms and treatment of people with Down syndrome and guide future research. Learn more about DS-Connect®: The Down Syndrome Registry.

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What are common treatments for Down syndrome?

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There is no single, standard treatment for Down syndrome. Treatments are based on each individual's physical and intellectual needs as well as his or her personal strengths and limitations.1 People with Down syndrome can receive proper care while living at home and in the community.

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People with Down's Syndrome generally have slanted, upturned eyes, a flatter nose bridge, a shorter neck, and smaller ears, hands, and feet, and are sometimes shorter than average.

People with Down's Syndrome can also be more prone to have ear infections, hearing loss, eye diseases, vision problems, sleep apnea, or congenital heart disease.

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What are the symptoms of Down syndrome?

Down syndrome causes physical, cognitive and behavioral symptoms. Not all people with Down syndrome have all of these symptoms. Symptoms and their severity are different from person to person.

Physical signs of Down syndrome

Physical signs of Down syndrome are usually present at birth and become more apparent as your baby grows. They can include:

A flat nose bridge.

Slanted eyes that point upward.

A short neck.

Small ears, hands and feet.

Weak muscle tone at birth.

Small pinky finger that points inward towards the thumb.

One crease in the palm of their hand (palmar crease).

Shorter-than-average height.

As your child grows, additional symptoms can arise because of the way that their body developed in the uterus, including:

Ear infections or hearing loss.

Vision problems or eye diseases.

Dental problems.

Being more prone to infections or illnesses.

Obstructive sleep apnea.

Congenital heart disease.

Your child's healthcare provider will regularly check for these and other conditions that may cause additional symptoms throughout your child's life.

Cognitive symptoms of Down syndrome

Your child with Down syndrome may have cognitive development challenges as a result of their extra chromosome. This can cause intellectual or developmental disabilities. Your child's ability to meet developmental milestones, or things that your child can do at a certain age, may differ from other children, including how they:

Walk and move (gross and fine motor skills).

Speak (language development skills).

Learn (cognitive skills).

Play (social and emotional skills).

As a result, it may take your child longer to do the following things:

Toilet training.

Speaking their first words.

Taking their first steps.

Eating food independently.

Behavioral symptoms of Down syndrome

Your child diagnosed with Down syndrome may exhibit behavioral symptoms. This can be the result of your child not being able to communicate their needs to you or their caregivers effectively. Behavioral symptoms of Down syndrome could include:

Stubbornness and tantrums.

Difficulty paying attention.

Obsessive or compulsive behaviors.

What causes Down syndrome?

An extra chromosome causes Down syndrome. Each human cell typically contains 23 pairs of chromosomes, which totals 46. Down syndrome occurs because of changes in the way cells in chromosome 21 divide. Every person with Down syndrome has an extra chromosome 21 in some or all of their cells.

There are three types of Down syndrome with different causes, including:

What is trisomy 21?

Trisomy 21 is the most common type of Down syndrome. The term " trisomy " means having an extra copy of a chromosome. Trisomy 21 occurs when a developing fetus has three copies of chromosome 21 in every cell instead of the typical two copies. This type makes up 95% of all cases of Down syndrome.

What is translocation Down syndrome?

Translocation is a type of Down syndrome where there's a partial or full amount of chromosome 21 attached to another chromosome. Unlike trisomy 21, translocation occurs when chromosome 21 isn't separate, but it relocates to another numbered chromosome. This type of Down syndrome accounts for less than 4% of all cases.

What is mosaic Down syndrome?

Mosaic Down syndrome is the rarest type of Down syndrome and accounts for less than 1% of all cases. Mosaicism occurs when only some cells contain the usual 46 chromosomes and some cells contain 47. The extra chromosome in some cells is chromosome 21.

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Down syndrome is a genetic condition where a person has an extra copy of chromosome 21 for a total of 47 chromosomes instead of 46.

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About 1 in every 700 babies are born with Down's Syndrome each year. This means about 6,000 babies.

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Centers for Disease Control and Prevention

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In recent years, Down syndrome has become more common, and children with Down syndrome are living longer. Read below for recent statistics on Down syndrome in the United States.
How many people are living with Down syndrome in the United States?
Babies:

Children and Adults:
What is the life expectancy for people with Down syndrome?

Many factors can affect how long a person with Down syndrome lives.

Sometimes infants with Down syndrome are born weighing less than 1,500 grams, or about 3.3 pounds. This is called "very low birth weight." These babies are 24 times more likely to die in the first 28 days of life compared to infants with Down syndrome of normal birth weight (between 2,500 grams and 4,000 grams, or between 5.5 and 8.8 pounds).
[Read summary ]

Black or African-American infants with Down syndrome have a lower chance of surviving beyond the first year of life compared with white infants with Down syndrome. More research is needed to help understand why.
[Read summary ]

Infants with Down syndrome who also had a congenital heart defect (CHD) were five times more likely to die in the first year of life compared to infants with Down syndrome who did not have a CHD.
[Read summary ]

What other health conditions affect people with Down syndrome?

About 50% of all babies born with Down syndrome are also born with a congenital heart defect. Babies with Down syndrome can be affected by a wide variety of heart defects. Many of these conditions will need surgery, while some milder heart defects might go away on their own as the child grows and may only need to be monitored by a healthcare provider.
[Read summary ]

Compared to children without Down syndrome, children with Down syndrome are at higher risk for:

Hearing loss (up to 75% may be affected)

Obstructive sleep apnea, a condition where a person's breathing temporarily stops while asleep (between 50 -75%)

Ear infections (between 50 -70% may be affected)

Eye diseases, like cataracts (up to 60%)

Eye issues requiring glasses (50%)

Heart defects present at birth (50%)

Intestinal blockage at birth requiring surgery (12%)

Hip dislocation (when the thigh bone slips out of the hip socket) (6%)

Thyroid disease (a problem with metabolism) (4-18%)

Anemia (red blood cells can't carry enough oxygen to the body) (3%)

Iron deficiency anemia (red blood cells don't have enough iron to carry oxygen to the body) (10%)

Leukemia (1%) in infancy or early childhood

Hirschsprung disease (an illness of the gut that can cause constipation) (<1%)This article includes the American Academy of Pediatrics Health Supervision for children with Down syndrome from 2011.
[Read summary ]
For more health care information for families of children with Down syndrome

What are the healthcare needs and costs for people with Down syndrome?

A study used data from the 2005-2006 National Survey of Children with Special Healthcare Needs (NSCSHN) to look at the effects of Down syndrome on families. Responses from the NSCSHN questionnaire indicated the following:

Nearly 60% of families of children with Down syndrome provided health care at home. Health care included practices such as changing bandages, care of feeding or breathing equipment, and giving medication and therapies.

Over 40% of families of children with Down syndrome had a family member who stopped working because of the child's condition.

About 40% reported the child's condition caused financial problems.
[Read summary ]

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Data and Statistics on Down Syndrome | CDC

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Read recent statistics on Down syndrome in the United States.

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Down's Syndrome is not usually inherited. It is caused by Trisomy 21, which is when chromosomes fail to separate during meiosis. Trisomy 21 is random, but the likelihood of having a baby with Down's Syndrome increases with age, as older parents tend to have children with Down's Syndrome more often than younger parents. Usually Down's Syndrome occurs in egg cells, only occasionally happening in sperm cells.

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Down syndrome is a chromosomal condition that is associated with intellectual disability, a characteristic facial appearance, and weak muscle tone (hypotonia) in infancy. Explore symptoms, inheritance, genetics of this condition.