Online Resources

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

Online Articles, Newsletters, and Blogs:

New Beginnings - A Magazine for Parents of Individuals with Down Syndrome published by the Down Syndrome Guild of Greater Kansas City.

The Riot! 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 - www.dsrf.org/index.cfm?fuseaction=publications.dsq

  • “Interdisciplinary journal devoted to advancing the state of knowledge on DS and will cover all areas of medical, behavioral, and social scientific research”

Disability Solutions - www.disabilitysolutions.org

  • Mission- “To do good work for and with people with developmental disabilities and their families, to improve the quality of life and communities.”
  • Research information, make it public
  • Share systems and tools to promote independence for people with developmental disabilities, regardless of ability

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 - 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 - www.imdsa.com

  • 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

A Centre County United Way Agency

1840 N. Atherton Street

State College, PA 16803

Ph: 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://www.co.centre.pa.us/561.asp

Willowbank County Office Building

420 Holmes Street

Bellefonte PA 16823-1488

MH/MR Administration : (814) 355-6782

Fax: (814) 355-6985

Drug/Alcohol Administration : (814) 355-6744

Base Service Unit : (814) 355-6786

Emergency (8:30 a.m. to 5:00 p.m. Monday - Friday) : (814) 355-6786

Emergency (5:00 p.m. to 8:30 a.m.) : 1-800-643-5432

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: Office of Mental Retardation (OMR) - http://www.dpw.state.pa.us/Disable/MentalRetardationServices/

Health & Welfare Building

Room 512, PO Box 2675

Harrisburg, PA 17105-2675

717-787-3700

Centre County United Way - http://www.ccunitedway.org/index.html

2790 West College Avenue, Suite 7

State College, PA 16801

Office: 814.238.8283

Fax: 814.238.5067

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/

Corporate Office

341 Science Park Road, Suite #6

State College, PA 16803

(814) 238-3245

Fax: (814) 238-5117

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. - www.sfionline.org

A United Way Agency

3054 Enterprise Drive

State College, PA 16801

Ph: 814-234-6023

Fax: 814-234-1439

  • 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.
  • The KIDS FIRST Early Intervention Program provides support and therapies to any child from birth to age three who is demonstrating a 25% delay in one or more areas of development. KIDS FIRST has staff with extensive training and experience in pediatric physical therapy, speech therapy and occupational therapy. Our teachers are trained in special education, infant and child development and early childhood education. We also contract with the Central Intermediate Unit for the services of a hearing impairment teacher, a vision teacher and assistive technology services and devices when needed by any of the families. Therapists provide these services in the child's home.

Bucks County DS Interest Group - www.bcdsig.org/default_home.aspx

  • Personal stories from families of people with DS
  • Pictures, documents, events/calendar, family directory, helpful links, reminders, directions, all about me, committee, general discussion, survey
  • They talk about education, medical issues, progress, etc.

Videos:

Johnny - Clip of a grocery store bagger with DS. It is very short, but it will remind you of why and how we make an impact in what we do.

Walgreen's Rocks

i have a voice

Life in the Fast Lane - Clip from the Today show featuring Self Advocate Karen Gaffney who swam Lake Tahoe to provide greater awareness and acceptance of individuals with Down syndrome.

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:

Stanford’s Center for Research and Treatment for Down Syndrome - www.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 - www.breastfeeding.asn.au/bfinfo/down.html

  • Tips for breast feeding a baby with DS
  • Explanation of importance of breast feeding

Music Therapy - www.coastmusictherapy.com

  • Promoting a creative environment for individual growth
  • Mission- “To serve children and adolescents who require a creative approach to learning by utilizing music to facilitate individual growth and achievement
  • Music as an innovative treatment tool for people with developmental disabilities

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
  • Goal: 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
  • Also a “retirement village” in North Carolina that includes living and working on a working farm

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:

Corporate Sign Language Resource Guide -
http://www.impactsigns.com/corporate-sign-language-resource-guide

  • Features general information and links to resources for learning more about sign language.

About Learning Disabilities - www.aboutlearningdisabilities.co.uk/home.htm

Features and articles written by professional journalists and experts - who have a particular interest or a background in learning disabilities.

Down Syndrome Swimming Organization - www.dsiso.org

  • Recreational activity and competitive sport
  • Coaching tips
  • Competitive opportunities

Afraid to Look Down: about the play by Cullen Douglas, a father of a boy with DS - www.afraidtolookdown.com

Site about the play, called “Remarkable” by US Weekly

Down Syndrome Web Ring - www.s.webring.com/hub?ring=downsyn

Informational site, about education, services, advocacy, law and medical issues.

“Beautiful Faces”- Calendars and note cards - www.bandofangels.com

  • Calendars, note cards of kids with DS
  • Proceeds support kids with DS

Signing Time! ASL videos for children - www.signingtime.com

Sign language videos website.

TLC Kids Company - www.tlckidscompany.com

Educational materials for children with disabilities.

John Langdon Down Foundation - The Mexican School of Down Art News

Mailing Lists/Newsletters:

http://www.ds-health.com/lists.htm