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Copyright 2015 Exceptional Family Resource Center

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DSA Ask the Experts OT and Children with Down Syndrome Presented by Jennifer Canaris, OTR-L 5.14.2022

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Rep. Crow Secures $950K for Down Syndrome Research

GLOBAL's Affiliate, the Linda Crnic Institute for Down Syndrome, acquired a state-of-the-art Immune Monitoring Station thanks to Community Project Funding that Rep. Jason Crow secured. READ MORE

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Global Down Syndrome Foundation | Research, Care, Education, Advocacy

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The Global Down Syndrome Foundation is dedicated to improving the lives of people with Down syndrome through research, medical care, education and advocacy.

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Donate

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. Your support helps make that vision a reality.

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Human Rights Organization for Individuals with Down syndrome | NDSS

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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. Your support helps make that vision a reality.

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The National Down Syndrome Congress (NDSC) is pleased to announce the recently elected 2023-24 Board of Directors Executive Committee (EC) members as well as our new Interim Executive Director (ED). Sean J. Smith, NDSC president, stated, "We are excited to have Stephanie Smith Lee step in as our Interim Executive Director, her experience supporting the Down syndrome community and love of NDSC as a parent, past board member, professionally and as a current member of our policy team all equip her to help take the NDSC to the next level. We are also excited about what this group of executive committee members, as both parents and professionals, bring to the NDSC and the community we serve." Below, we share the names and contact information for the members of the EC and include brief bios of our Interim ED and new NDSC President. Click here to learn more.

The National Down Syndrome Congress is dedicated to an improved world for individuals with Down syndrome. We are the leading national resource of support and information for anyone touched by or seeking to learn about Down syndrome.
Educate. Advocate. Empower. Inspire.

Join NDSC today!

Become a member of the leading national organization providing information for anyone touched by or seeking to learn about Down syndrome.
Create your FREE member profile

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The purpose of the NDSC is to promote the interests of people with Down syndrome and their families through advocacy, public awareness, and information. When we empower individuals and families from all demographic backgrounds, we reshape the way people understand and experience Down syndrome.

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Trisomy 21 Research Society (T21RS) is the first international non-profit scientific organization of researchers studying Down syndrome. T21RS was founded to promote basic and applied research on Down syndrome, stimulate translational research and apply new scientific knowledge to improve the quality of life for people with Down Syndrome.

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To serve and empower persons with developmental disabilities and their families to achieve their goals with community partners.

The San Diego Regional Center is one of 21 regional centers in California that provides support and services to persons with developmental disabilities. We are the starting point to determine eligibility for you or a loved one to receive services.

Any San Diego or Imperial County resident believed to have a developmental disability may apply for services. Eligibility is determined by the social, medical, and psychological information gathered during the intake process.

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San Diego Regional Center: To serve and empower persons with developmental disabilities and their families to achieve their goals with community partners.

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CA Department of Developmental Services - Agency through which the State of California provides services and supports to individuals with developmental disabilities.

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Welcome to the Self-Determination Program (SDP) homepage! We are excited about the possibilities and opportunities this program provides for individuals who receive regional center services.

In October of 2013, Governor Edmund G. Brown Jr. signed SB 468 (Emmerson) into law to create the SDP. SDP provides individuals and their families with more freedom, control, and responsibility in choosing services and supports to help them meet objectives in their Individual Program Plan. During the 3-year implementation period of the SDP, the program only was available to 2,500 individuals. Starting July 1, 2021, the SDP now is available to all eligible individuals receiving services from a regional center.

This site is designed to allow individuals interested in the program, participants already in the program and their related support system access to resources to assist in getting enrolled and learning about the SDP. If you are interested in participating in the SDP, reach out to your regional center for more information on how to get started.

If you have other questions, comments, or want to be notified of updates, please e-mail sdp@dds.ca.gov

The Self-Determination Local Advisory Committee at Central Valley Regional Center (CVRC) put together a video that talks about a meaningful life in the community through the Self-Determination Program. You can watch the video on the CVRC website.

Last modified: May 4, 2022

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State of California & Department of Developmental Services

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Self-Determination Program (SDP) - CA Department of Developmental Services

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Welcome to the Self-Determination Program (SDP) homepage! We are excited about the possibilities and opportunities this program provides for individuals who receive regional center services. In October of 2013, Governor Edmund G. Brown Jr. signed SB 468 (Emmerson) into law to create the SDP.

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Self Determination Program | San Diego Regional Center

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Self Determination Program | San Diego Regional Center

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Self Determination Program | San Diego Regional Center

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**NEW** Complete the Self-Determination Orientation in two easy parts!

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Dr. George Capone is a research scientist and director of the Down Syndrome Clinic and Research Center (DSCRC) at Kennedy Krieger Institute and is also an associate professor of pediatrics at the Johns Hopkins University School of Medicine.

Education

Dr. Capone attended college at Wesleyan University and worked as a research assistant at the Dana Farber Cancer Institute in Boston before obtaining his medical degree from the University of Connecticut in 1983. After a residency and fellowship in pediatrics at the Children's Hospital Medical Center in Cincinnati, Dr. Capone came to Baltimore in 1988 to pursue a fellowship in neurobiology research at Johns Hopkins. Dr. Capone currently serves as the director of Kennedy Krieger Institute's Down Syndrome Clinic and Research Center (DSCRC), and is an attending physician on the institute's comprehensive rehabilitation unit.

Research

Down syndrome is a genetic disorder that occurs in approximately 1 in 733 live births. It is caused most often by an abnormality during cell division in gamete formation called nondysjunction. As a result, the fertilized egg will contain three copies of chromosome 21. The extra chromosome interferes with normal growth and development.

Dr. Capone and his colleagues are committed to research that explores the neurobiologic basis of cognitive impairment and co-morbid neurobehavioral and psychiatric disorders associated with Down syndrome.

Related Links
Elsevier Fingerprint Engine Profile for George Capone
Research Publications

Capone GT, Goyal P, Grados M, Smith B, Kammann H (2008). Risperidone use in children with Down syndrome, severe intellectual disability, and comorbid autistic spectrum disorders: a naturalistic study. J Dev Behav Pediatr. 29(2), 106-16.

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Dr. George Capone is a research scientist and director of the Down Syndrome Clinic and Research Center (DSCRC) at Kennedy Krieger Institute and is also an associate professor of pediatrics at the Johns Hopkins University School of Medicine.

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Log into Facebook to start sharing and connecting with your friends, family, and people you know.

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DSASD sponsors and co-sponsors many support groups and activities throughout San Diego County that provide social interaction as well as practical support in order to reduce stress, to develop constructive coping skills and exchange information.

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Down Syndrome Clinic to You (DSC2U) brings the best of health and wellness information about Down syndrome to caregivers and primary care physicians around the globe.

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The Down Syndrome Center for Research and Treatment (DSCRT) is one of the first programs in the country to connect academic research with treatment of adults and children with Down syndrome.

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The Down Syndrome Center for Research and Treatment (DSCRT) is one of the first programs in the country to connect academic research with treatment of adults and children with Down syndrome.

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Our Mission: To improve the quality of life for children with Down syndrome and their families by offering coordinated assessments, connections to resources, education and advocacy.
Overview

The Down Syndrome Center improves the consistency of care for children with Down syndrome, serves as a resource for other medical professionals, and strengthens the social network for families.

Down syndrome is the most common of all chromosomal abnormalities, occurring in approximately one in every 800 births. Children with Down syndrome usually have delays in physical, intellectual and language development, and they require specialized services to help them reach their full potential. Learn more about Down syndrome.

Our services include:

Assessment by a multidisciplinary team

Genetic counseling

Comprehensive case management

Patient advocacy

Social services

Dietary and nutrition services

We also help connect families to community agencies for educational and therapeutic interventions.

Meeting Community Needs

Our Center, which opened in January 2008, was established through a partnership between Rady Children's Hospital-San Diego and DS Action (a local non-profit group) to address the unmet needs of children with Down syndrome. Watch the video below to learn more.

In the News

Those with Down Syndrome Living Longer, Defying Limits, The San Diego Union-Tribune, features Sheila Gahagan, M.D., M.P.H.

Support Our Program

One hundred percent of your tax-deductible gift benefits Rady Children's. To make a donation, click here and type "Down Syndrome Center" in the Comments section of the form.

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Our Mission: To improve the quality of life for children with Down syndrome and their families by offering coordinated assessments, connections to resources, education and advocacy. The Down Syndrome Center improves the consistency of care for children with Down syndrome, serves as a resource for other medical professionals, and strengthens the social network for families.

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https://adscresources.advocatehealth.com/resources/

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Our Mission: is to increase positive awareness of Down syndrome through national campaigns, educational programs, and by empowering individuals with Down syndrome, their families and the community.

Our Vision: is to see a world where individuals with Down syndrome are accepted and embraced in their families, schools, and communities.

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Our Mission: is to increase positive awareness of Down syndrome through national campaigns, educational programs, and by empowering individuals with Down syndrome, their families and the community. Our Vision: is to see a world where individuals with Down syndrome are accepted and embraced in their families, schools, and communities.

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DS Action | San Diego Down Syndrome Support

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DS Action’s mission is to identify the unmet needs of people with Down syndrome and to find creative solutions to meet those needs.

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https://www.lumindidsc.org/s/1914/20/home.aspx?gid=2&pgid=61

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https://publications.aap.org/pediatrics/article/149/5/e2022057010/186778/Health-Supervision-for-Children-and-Adolescents

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Marilyn J. Bull, Tracy Trotter, Stephanie L. Santoro, Celanie Christensen, Randall W. Grout, THE COUNCIL ON GENETICS; Health Supervision for Children and Adolescents With Down Syndrome. Pediatrics May 2022; 149 (5): e2022057010. 10.1542/peds.2022-057010

Download citation file:

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Health Supervision for Children and Adolescents With Down Syndrome

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This clinical report is designed to assist the pediatrician in caring for the child, adolescent, and family in whom a diagnosis of Down syndrome has been confirmed by chromosome analysis or suspected by prenatal screening.

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Health Supervision for Children and Adolescents With Down Syndrome