Resources
Web sites of a variety of resources related to Down syndrome
Resources
- 5 Minutes for Special Needs
Support, insight, and inspiration. Part of the 5 Minutes for Mom series. - Anna’s Angels
Dedicated to promoting research for Down syndrome - Annie Forts Up Syndrome Fund, Inc.
Providing enrichment opportunities to persons with Down syndrome. - Archie’s Room
Personal website sharing their family story with Down syndrome, heart disease, and pediatric cancer - Baby Sign Language
Free resource to parents striving to establish early communication bonds with their infants and/or aiding their children with expressive communication. - Band of Angels Press
Founded to create and distribute products starring children with Down syndrome. - Be Not Afraid.net
An outreach to parents with poor prenatal diagnosis - Bernadette Resha
Website of an artist who happens also to have been born with Down syndrome - Beyond Play
Early Intervention Products for Young Children with Special Needs - Brad Hennefer-Golf for Life
Providing Golf Opportunities to Individuals with Down Syndrome - Bridget’s Light
We welcome readers into our lives with the hope of furthering understanding of Down syndrome, and helping others see how beautiful life is for us with Bridget as a part of our family… - Buddy Walk
The Buddy Walk is a one-mile walk in which anyone can participate without special training. Buddy Walk was established in 1995 by the National Down Syndrome Society to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclus - Buddy Walk Video, Times Square 2007
Video of the NDSS-sponsored Buddy Walk as it went through Times Square, New York City - Campaign for Down Syndrome
Blog tracking genetic research and its social implications, presented by Renate Lindeman - CaringBridge website of John Bremer
John was diagnosed with Acute Lymphoblastic Leukemia (A.L.L.) in June 2005 and will finish treatment in August 2008 - Chris Burke
Site for the Chris Burke band. Chris is best known for the four years he spent playing Charles “Corky” Thatcher on the hit ABC-TV show “Life Goes On” and his reoccurring role as Taylor, the angel of faith on the hit CBS-TV show “Touched By An Angel”. - Club NDSS
A web site for people with Down syndrome and other developmental disabilities - Colin & Katrina’s Family Website
Includes the story of their son’s “heart story,” information everyone should learn, and links to the web resources this Edmonton family found valuable. - Communicating Partners (Dr. James D. McDonald)
Helping Parents Help Children: parents are in the best position to make sure their child develops social and communicative skills to their potential. - Diagnosis Down Syndrome
Lee family website of information and encouragement - Disability Solutions
A free publication for families and others interested in Down syndrome and developmental disabilities - Down Syndrome Educational Trust
The Down Syndrome Trust works around the world to improve development, education, and social achievements of people living with Down syndrome. - Down Syndrome for New Parents
A resource for those who love someone with Down syndrome - Down Syndrome Health Issues by Len Leshin
Resource site by Pediatrician who is also a parent of a child with Down syndrome - Down Syndrome Online
“Comprehensive, up-to-date and reliable information, guidance and news about Down syndrome.” Published by the Down Syndrome Educational Trust - Down Syndrome Quarterly
Publication (Academic) of the Down Syndrome Research Foundation - Down Syndrome Research Online Advocacy Group
Bridging the Gap Between Parents and Down Syndrome Research - Down Syndrome Resources Online
A list of links relevant to parents of children with Down syndrome. Topics include health care, education, inclusion, personal stories, and more. - DS2008 – Shifting Perspectives
Photographer Richard Bailey’s photograph calendars are noted for his portraits of children and young adults with Down syndrome - Einstein Syndrome
Online Magazine, “Down Syndrome with a Positive Attitude” - Features by Pamela Wilson, BellaOnline’s Special Needs Children Editor
Various articles about Special Needs Children edited by mother of a child with Down syndrome - Growth Charts for Children with Down Syndrome
- Guide book for medical professional; book for expectant parents
Resource materials for new parents and doctors delivering diagnosis. Created by the design firm Canisterco, with current information and photography. - Iowa: Iowa Respite & Crisis Care Coalition
Whether you are caring for a loved one with special needs and would like rest, if you need training, or if you are currently in a crisis and need time away from your children, we can help! - Jennifer Graf Groneberg
Author of “Road Map to Holland” - Karen Gaffney Foundation
Dedicated to full inclusion in families, schools, communities, and the workplace for people with Down syndrome or other developmental disabilities. - Lili Claire Foundation
Helping children living with neurogenetic conditions, while providing hope and resources to the families who love them. Las Vegas, Los Angeles, Nashville. - Lives Touched by Down Syndrome
website and book featuring personal stories about individuals with Down syndrome. - Loving and Learning
reading and language development techniques and materials - Michael Jurogue Johnson
Michael Johnson, a talented artist who happens to have Down syndrome - Minor Family
An African-American family celebrating the life of their child with Down syndrome. - Mosaic Down Syndrome
Site for Mosaic Down syndrome, a chromosomal variant of Down syndrome - Movie site for documentary “Up Syndrome”
Director’s portrait of charismatic childhood friend, who has Down syndrome. On DVD May 15, 2008, and through Netflix. - National Down Syndrome Congress
It is the purpose of the National Down Syndrome Congress to create a national climate in which all people will recognize and embrace the value and dignity of people with Down syndrome. - National Down Syndrome Society
The mission of the National Down Syndrome Society is to benefit people with Down syndrome and their families through national leadership in education, research and advocacy. - New Mexico: ARCA
Dedicated to providing premier residential and vocational services to people with developmental disabilities - Pathfinder Village
A Residential Community in Central New York dedicated to children and adults who have Down syndrome. - Personal Website: Alexandra Rose
Personal website celebrating Alexandra Rose - Public Man, Private Father (Charles de Gaulle was the father of a child with Down syndrome))
Charles de Gaulle, leader of the Free French Forces during World War II, was also the loving father of a daughter with Down syndrome. What lessons might that daughter’s life hold for those of us who have followed in her family’s footsteps? - Pujols Family Foundation site. “faith, family, others”
Foundation of the family of major league baseball player Albert Pujols. Dedicated to the love, care, and development of people with Down Syndrome and their families. - Raymond Hu’s Website
Rayond Hu is an artist with Down syndrome who is known for his Chinese brush paintings of animals, in ink and watercolor. A film documentary of Mr. Hu’s life and work was made in 1997, and a book has been published about his work. - Reece’s Rainbow
International Down Syndrome Orphan Ministry. Adoption, Advocacy, Outreach, and Aid - Seattle College Program for Special Needs Adults
October 17, 2005. NPR radio segment on a community college program for high-functioning students with Down syndrome or other issues. (3 min.) - Signing Time
American Sign Language Videos - Social Security and Disability Resource Center
The Social Security and Disability Resource Center website (SSDRC.com) provides a detailed overview of how the federal disability system works (social security disability and SSI) and also provides answers to many questions that applicants typically have, - Soeren Palumbo Fremd HS Speech 2/28/07
YouTube Video (10 min) High School speech about why the word “retard” is offensive. - Sujeet Desai
Site of a Musician with Down syndrome who lives and works in the Rome, New York area - The Simple Truth of Service, inspired by Johnny the Bagger
Video slideshow about a young man with Down syndrome, and how he wanted to do something special for customers where he works. - Victoria and Me
Photographer Maria de Fatima Campos tells about the first three years with her daughter with Down syndrome in words and pictures. (note: includes artistic semi-clothed pregnancy self-portrait.) - Welcome to Holland
famous 1987 short essay by Emily Perl Kingsley, about having a child with Down Syndrome, though it is applicable to many other birth defects, and is given by many hospitals and child-care professionals to new parents of special-needs children. - What To Say to Parents of a Child With a Diagnosis
This speech was written for a Christian Mothers Of Preschoolers Group. It contains Bible Verses. You have my expressed permission to print this speech, personalize it, customize it, use the research and deliver it to any audience. - World Down Syndrome Day
Down Syndrome International (DSI) has officially earmarked 21 March as World Down Syndrome Day (WDSD). - Wrights Law Special Education Law and Advocacy
Books
- Aussergewoehnlich
(in German) Portrait photography book of children with Down syndrome, by Conny Rapp - Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Our Lives
(You are at this website now) In this candid and poignant collection of personal stories, sixty-three mothers describe the gifts of respect, strength, delight, perspective, and love, which their child with Down syndrome has brought into their lives. - Guide book for medical professional; book for expectant parents
Resource materials for new parents and doctors delivering diagnosis. Created by the design firm Canisterco, with current information and photography. - He Has Up Syndrome Not Down Syndrome
site for the book by Caroline Brandt - I Just Am
site for the book “I Just Am.” Written by a young man with Down syndrome and his father. - Jennifer Graf Groneberg
Author of “Road Map to Holland” - Spirit Courage and Resolve
Site for the book telling the story of a Special Olympics athlete’s road to gold
December 18th, 2009 at 9:38 pm
Hi all, could you add my son Jacob’s website to your Resources Listing.
http://www.JacobHalpin.com
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Jacob is the only high school varsity athlete with Down syndrome to have earned All-State honors. He was also the first athlete from the United States to hold world records through the Down Syndrome International Swimming Organization.
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Aside: The website was set up by the Gulf Shores, Alabama Kiwanis Club. It contains many photos of Jacob’s high school years and related activities.
Jacob was co-captain of swim team in senior year, voted most popular, All-State & All-County honors, participated in 4 Alabama High School State Championship Swim Meets, received Alabama High School Sports Magazine’s Humanitarian Award, Who’s Who in High School Sports, Who’s Who Among American High School Students. Photos of Jacob as an Auburn Univ. National Champion Swim Teams mascot 2000-2005, with buddy Rowdy Gaines 3 time US Olympic gold medalist and NBC, ESPN, FOX swim commentator for last 5 Olympic games, see Gulf Shores mayor’s Proclamation recognizing Jacob and his letter of support for Jacob’s recognition by the Alabama Sports Hall of Fame, etc.
January 6th, 2009 at 10:43 am
Hi, I was wondering if it would be possible to add my 501(c)3 non-profit organization, HILLS, to the list of resources? We are an organization based in the Denver area that provides social, recreation and vacation programs for people with Developmental Disabilities. Please let me know if you need any further information. Thanks!