Many of the following websites, and more, can be found at www.downsyndrome.com.

Online Articles, Newsletters, and Blogs:

  • New Beginnings – http://kcdsg.org – A Magazine for Parents of Individuals with Down Syndrome published by the Down Syndrome Guild of Greater Kansas City.
  • The Riot! – http://www.theriotrocks.org/
    • E-newsletter for self-advocates. Self-advocates are people with disabilities who speak up for themselves and others. Self-advocates speak up with spoken words, sign language, language boards or in ways unique to each person.
  • Down Syndrome Quarterly – http://www.dsrf.org/5028/42/
    • Interdisciplinary journal devoted to advancing the state of knowledge on DS and will cover all areas of medical, behavioral, and social scientific research
  • Down Syndrome Amongst Us – www.dsau.org
    • Mission- To help you navigate through the special needs world by sorting out and dealing with your needs and the needs of your child.
    • Geared towards parents of kids with DS.
    • Includes special grandparents page, also articles and features, perspectives, etc.
  • Life with Anthony – http://www.cnn.com/2008/HEALTH/family/02/13/par.life.with.anthony/index.html
    • Article from Parenting.com
  • Lilienna! – http://lilienna.blogspot.com/
    • Blog about life with a DS daughter.
  • Down Syndrome Life – http://downsyndromelife.blogspot.com/
    • Father’s blog with thoughs and experiences raising a family of four, one with DS.

National Organizations:

  • National Down Syndrome Congress – www.ndsccenter.org
    • Headings: News and Events, Parent Resources, In Government, Self-Advocates, About Us, Membership.
    • This association was born during a need for advocacy. Their desire- To make a shift from isolating people with disabilities to bring them into our communities.
    • They also wish to raise awareness globally for people with Down Syndrome.
  • National Down Syndrome Society – www.ndss.org
    • Headings: Press Center, About NDSS, Ways to Give, Message Board, E-Cards, Resources, Contact Us.
    • NDSS is committed to being the national leader in enhancing the quality of life, and realizing the potential of all people with Down Syndrome.
  • International Mosaic Down Syndrome Association – http://www.imdsa.org/
    • Focus on support, reaching out to other families
    • Less common form of Down Syndrome
    • Hope to inform people with a lack of resources about Mosaic DS 95% of people with DS have Trisomy 21, 5% have translocation (TDS) or mosaic (MDS).
    • TDS- nearly all or part of a chromosome 21 becomes attached to another chromosome in the cell.
    • MDS- two or more types of cells that differ in their genetic makeup (only a percentage of cells have extra chromosome 21).

PA Sites:

  • The Arc of Centre County – http://taocc.org
    1840 N. Atherton Street
    State College, PA, 16803
    814-238-1444

    The Arc of Centre County was started in 1953 by a group of concerned parents. The chapter has grown to serve over 200 people. All of The Arc’s efforts are geared towards ensuring the rights of persons with developmental disabilities, supporting their families, and helping each person reach his or her personal best, through an array of community services. Services offered by The Arc include Community Living Arrangements; Supported Living; Family Living and Home-Based Waivers; Family Support Services; Nittany Employement Services; and Life-Link, a cooperative effort with the State College Area School District.

  • Centre County Office of Mental Health/Mental Retardation-Drug and Alcohol – http://centrecountypa.gov/index.aspx?NID=329
    Willowbank County Office Building
    420 Holmes Street
    Bellefonte, PA, 16823
    814-355-6782

    MH/MR-DA consists of public and private agencies that work together to treat persons with a mental disability. Identifies, evaluates, and treats persons with mental illness or mental retardation. Provides a range of treatment options to enable persons with mental illness or mental retardation to remain in the community and lead productive lives. Strives to prevent hospitalization or institutional care. Provides crisis intervention services. Provides comprehensive prevention, intervention, treatment, and referral services for any person with drug and alcohol use/abuse issues. Provides information and referral assistance. All services are confidential.

  • PA Dept of Welfare: Intellectual Disabilities Services – http://www.dpw.state.pa.us/foradults/intellectualdisabilitiesservices/
    Health & Welfare Building
    Room 512, PO Box 2675
    Harrisburg, PA, 17105
    717-787-3700
  • Centre County United Way – http://ccunitedway.org/
    2790 West College Avenue, Suite 7
    State College, PA, 16801
    814-238-8283

    Centre County United Way is a volunteer-driven organization that helps a broad range of local health and human service organizations provide services, through an annual fundraising campaign. Centre County United Way does much more than raise money. It collaborates with other community partners to plan for future community needs, matches non-financial resources with people who need them, recruits and trains volunteers, and serves as an information and referral service to put people in touch with the services they need.

  • Skills of Central PA – http://www.skillsofcentralpa.org/
    341 Science Park Road, Suite #6
    State College, PA, 16803
    814-238-3245

    Established in Bellefonte, PA in 1960, Skills is one of the oldest and largest human service provider organizations in central Pennsylvania. It is classified as a private, non-profit, 501 (c) (3) organization. Currently Skills serves 1100 individuals with disabilities in 14 counties and employs 900 staff. Skills provides residential, community, and behavior support services for mentally and physically disabled individuals in central Pennsylvania, as well as children and youth programs for children and adolescents requiring protective custody.

  • Strawberry Fields, Inc. – http://www.sfionline.org/
    3054 Enterprise Drive
    State College, PA, 16801
    814-234-6023

    Strawberry Fields offers a wide range of services appropriate to varying degrees of disability and need while promoting greater independence, social involvement and self-reliance through personalized support programs.

  • Bucks County DS Interest Group – http://www.bcdsig.org/

    Personal stories from families of people with DS including discussions about education, medical issues, progress, etc.

Medical Resource Links:

  • Down Sydrome: Health Issues – www.ds-health.com
    • Includes medical articles dealing with different aspects/ medical problems involved with DS
  • Down’s Heart Group – www.dhg.org.uk
    • Deals specifically with heart issues in people with DS
  • Growth Charts for Children with Down Sydrome – www.growthcharts.com
    • Detailed chart of where kids with DS generally develop along the growth chart

Other Parent Resources:

  • Down Syndrome Research Center at Stanford University – http://dsresearch.stanford.edu/
    • Mission-To help people with DS lead healthier and happier lives by rapidly, effectively applying research discoveries to useful treatments
  • Breast Feeding a Child with Down Syndrome – https://www.breastfeeding.asn.au/bf-info/down
    • Tips for breast feeding a baby with DS & an explanation of importance of breast feeding
  • Music Therapy – www.coastmusictherapy.com
    • Mission- To serve children and adolescents who require a creative approach to learning by utilizing music to facilitate individual growth and achievement

Non-Profit Foundations:

  • Down Syndrome Research and Treatment Foundation – www.dsrtf.org
    • Mission- To stimulate bio-medical research that will accelerate the development of treatments to significantly improve cognition for individuals with Down Sydrome
  • Down Syndrome Advocacy Foundation – www.dsafonline.org
    • Promotes advocacy, support, community acceptance and responsibility to enhance lives of people with Down Sydrome
  • The Possible Dream Foundation – www.possibledream.org
    • Description of homes in Miami, FL that provide long term custodial care, short term respite care, hospice care, guidance to family and friends, after school and day care services, and on the job training for people with special needs.

Camps in PA:

  • Camphill Soltane-PA – www.camphillsoltane.org
    • Residential living community
    • Ongoing education including- community living, classroom study, work opportunities on and off of the campgrounds, and artistic, cultural and recreational activities
    • Self-advocacy promoted

Other Notable Sites:

Mailing Lists/Newsletters: