Links & Resource Center
(Resource Center Near Bottom)
Tip:
When utilizing search engines for the subject "down syndrome", try typing
in trisomy 21, DS, disability, support group, special needs, genetics,
chromosonal disorders, mental health, exceptional children.
You'll be surprised. Happy
surfing!
Links:
Down Syndrome Category:
1. www.ndss.org - National Down Syndrome Society
2. members.carol.net/~ndsc/- National Down Syndrome Congress (NDSC)
3. National Association for Down Syndrome - P.O. Box 4542, Oak Brook, Il. 60522 Phone# 630-325-9112 (http://www.nads.org)
4. www.downsyndrome.com- The Family Empowerment Network. One of the best DS resource I have seen. All sorts of links, magazines, Canadian links, Institutes, Medical, Educational, Disabilities, Government, Message Boards, Parent Advocacy, Get on their Mail List, Upsndowns Archives, Upsndowns Chat Room, Software for the disabled, Dictionary of Mental Health and Kids' Web Sites. The resources are too many to list all. Check this out!!
5. www.denison.edu/dsq- Down Syndrome Quarterly
6. http://www.du.edu/~sjukar/sujeet.html - A 16 year old musician with Down Syndrome. His own website.
7. http://www.ds-health.com - Dr. Len Leshin MD, FAAP, a pediatriciann in Corpus Christi, Texas. He has good basic information on Down Syndrome, controversies and information.
8. www.nas.com/downsyn/dshm.html - DS Preventative Medical Checklist
9. down-syn - Down Syndrome listserv; the Down Syndrome discussion group
10. Beautiful Faces
Calendar
Beautiful Faces calendar featuring
beautiful children with down syndrome.
Brought to you by Kidder Resources,
Inc.
Visit their website at: http://www.beautifulfaces.org
11. GrowthCharts
12. e-mail to: nxtmedia@centurion.flash.net. The Parents Regional Outreach for Understanding Downs (Orange, Ca. 714-974-6419)
13. Joy of Downs Inc. presentsCamp
Many Stars- A year-round camp for families with children with
Down Syndrome. Location: Spanish Fork, Utah.
( a non-profit organization) Phone #801-798-1319
(http://www.thejoyofdowns.org)
1. www.disability.com - Solutions From Disability.Com
2. The National Parent Network on Disabilities
(NPND)
was established
to provide a presence and national
voice for parents
of children, youth, and adults with
special needs. http://www.npnd.org
3. www.pdassoc.com - Program Development Associates - Qualitty Resources related to disabilities; videos, software, board games and curriculum.
4. http://www.geocities.com/Athens/Forum/1997/disabili.htm
Disability resource page written by a person that writes
for a magazine called People with Disabilities. This person
is also disabled. Very nice site.
5. http://www.geocities.com/CapitolHill/1703/
Disability Resources on the Internet. One of the
Best!
6. The National Information Center for Children and Youth with Disabilities (NICHCY). http://www.nichcy.org/
7. Through the Looking Glass an international
leader on
disability and family issues is sponsoring an
international conference on parents with disabilities and their families,
http://www.lookingglass.org
8. Parents Helping Parents web site. http://www.php.com
9. Our-Kids is a support group for
parents, care givers and
others who are working with children with physical
and/or mental disabilities and delays.
http://www.rdz.stjohns.educ/library/support/our-kids
10. Family Village a global community
that integrates
information, resources, and communication
opportunities on the Internet for persons with
mental
retardation and other disabilities, their families,
and
those that provide them services and supports.
http://www.familyvillage.wisc.educ
11. Adapt.
There's no place like home, and we mean real
homes, not nursing homes. We are fighting so people
with disabilities can live in the community with
real
supports instead of being locked away in nursing
homes and other institutions. http://www.adapt.org
12. Advocate's Association for Disability Independence
(AADI).
http://www.geocities.com/capitolhill/lobby/2098
13. American Association on Mental Retardation
(AAMR).
http://www.aamr.org
14. The Association for People with Severe Disabilities
(TASH). http://www.tash.org
15. Disability Information and Communication
Exchange
(DICE). http://www.peg.apc.org/~dice
16. National Easter Seals Society (NESS). http://www.seals.com
17. The Arc of the United States. The
Arc (formerly
Association for Retarded Citizens of the United
States) http://www.theArc.org
18. American Therapeutic Recreation Association
(ATRA).
http://www.atra-tr.org
19. Epilepsy Foundation of America. www.efa.org
Active Voices in Disability (AVID). http://www.acun.com/avid
Health Issues:
1. www.cmhc.com - Mental Health Net
2. www.allabouthealth.com- Welcome to All About Health
3. www.medaccess.com
-
MedAccess: Index
4. www.mdmh.state.mi.us - Michigan Community Health
5. www.disprodpc.com - The Boulevard; A Mental Health Site forr the Disabled by the Disabled
6. ds-tni - Targeted Nutritional Intervention listserv; a TNI (Nutrivene-D) discussion group
7. www.ama-assn.org - The Americcan Medical Association
8. www.pitt.edu/home/ghnet- The Global Health Network (great links to public helath resources and organizations)
9. www.kidshealth.org - Kid'sHealth; built by pediatric medicall experts from duPont Hospital for Children and the Nemour's Children's Clinic for parents & children
10. www.mayo.ivi.com - Mayo Health O@sis; post questions to Maayo Clinic, search for information, browse news articles. Areas include a library, cancer center, nutrition page, heart center, medicine center, and pregnancy and children pages.
11. www.nim.nih.gov - The U.S. NNational Library of Medicine (part of the National Institute of Health)
12. www.healthy.net/selfcare- Self-Care Central
13. www.columbia.edu/cu/healthwise- Healthwise at Columbia University
14. www.nlm.nih.gov/databases/medline.html - The National Librrary of Medicine has now opened Medline to everyone. Medline is the online service that doctors have been using for years to find published articles on everything. It is now free for all of us.
15. www.nutrichem.com- Nutri-Chem of Ottawa, Ontario. Bridging the gap between Nutrition and Chemistry. Nutritional supplementation for Down Syndrome.
16. www.kidsfood.org - Nutrition Website for Kids; Great for kids and mom & dad too.
17. http://www.fda.gov/opacom/backgrounders/tophealt.html
The FDA Top Health Care Fraud page.
18. http://www.ncahf.org - National Council Against Health Fraud ppage.
19. An Intemet jump-station to sources of
information on rare
genetic diseases affecting children.
http://www.mcrcr2.med.nyu.edu/murphp0l/homenew.htm
20. Ameri-Corp Speech and Hearing
has developed a gifted
and special education web-site for parents called
Parent Pals. http://www.parentpals.com
21. Children and Adults with Attention
Deficit Disorders
(CHADD). http://www.chadd.org
22. St. John's University sponsored site
on managed care
and disabilities. http://www.tile.net/tile/listserv/mcaredis.htm
23. A list of professional and personal web
pages devoted
to rare genetic disorders in children. Includes
links
to support groups and mailing lists, http://mcrcr4.med.
nyu.edu/~murphp0l/homenew.htm
24. The National Rehabilitation Center
(NARIC). NARIC
offers free access to REHABDATA, its database
of
literature on rehabilitation, disability and assistive
technology, http://www.naric.com/naric
25. National Health Information Center (NHIC). Federal health and referral service from the Office of Disease Prevention and Health Promotion, U.S. Department of Health and Human Services. http://nhic-nt.health.org
26. Director of Information Resources Online
(DIRLINE)
at the National Library of Medicine HealthfinderTM web site.
http://www.healthfinder.gov
27. http://www.umich.edu/~cmbds/
- The Center for Motor Behavior in Down SSyndrome at the University of Michigan;
Division of Kinesiology. The site includes information about current
and reviewed research in motor
behavior in Down Syndrome, as well as related information
for parents of children with DS. Dr's Bev and Dale Ulrich and Dr
Rosa Angulo-Kinzler invite you to use the site and link to it as you see
fit.
Education, Employment & Parent Advocacy:
(includes assistive technology& political action)
1. U.S. Department of Education (U.S.A.)
http://www.ed.gov
Also, a full
text of the IDEA (Individuals with Disabilities Education Act) and Amendments
of 1997.
2. Citizen Alliance to Uphold Special Education - Lansing, Mi. 1-800-221-9105
3. www.earlyon-mi.org - Early On Michigan. The home site of the the initiative of the Department of Education, Community Health and the Family Independence Agency.
4. http://www.geocities.com/HotSprings/Spa/2192/PDCsuppt.html
WWW Sites with Information About Support Services and
Education for Parents and Families.
5. Project Choices "least restrictive environment" initiative funded by the Illinois State Board in Education http://www.projectchoices.org
6. Educational video programs and other multimedia
materials on the subject of inclusion of students with disabilities into
regular schools.
http://www.comforty.com/inclusionseries.htm
7. The National Center to Improve Practice
(NCIP),
promotes the effective use of technology for
students with sensory, cognitive and social/
emotional disabilities, http://www.edc.org/FSC/NCIP/
8. Web site and list serve on inclusive-education.
Topics
range from classroom modifications to national
policy developments. http://www.mailbase.ac.uk/lists/inclusive-education
9. PACER Center provides technical assistance
and
training to the
federally-funded parent training and
information centers
in each state. http://www.pacer.org
10. The Assistive Technology Funding and Systems
Change Project provides up-to-date information on the latest
laws, regulations, and policy developments related
to funding assistive technology. http://www.ucpa.org/html/innovative/atfsc/index.html
11. Empowerment Zone. A collection of electronic
resources
on the subject of political action. http://www.empowermentzone.com
12. Advocates's Association of Developmental
Disabilities
Councils (NADDC). Promotes national policy
which
enables individuals with developmental disabilities
the opportunity to make choices regarding the
quality of their lives and be included in the
community. http://www.igc.apc.org/NADDC
13. National Association of Protection and Advocacy
Systems
(NAPAS). An association which represents federally
mandated programs that protect the rights of persons
with disabilities. http://www.protectionandadvocacy.com
14. Band-Aids and Blackboards. This site
lets others know
what it is like to live with a chronic disease
or other type of medical problem. http://www.funrsc.fairfield.edu/~jfleitas/contents.htm
15. Labor Source Web Site. http://www.ddcboulder.com/lbrsrc.htm
16. Alternative Work Concepts. A supported
employment agency working with people with disabilities. http://www.teleport.com/~awc/
17. President's Committee on Employment of People
with
Disabilities. Tap into information on a
variety of disability employment issues. http://www.pcepd.gov
1. The Arc of St. Clair County - 1033 26th Street, Port Huron, Mi. 48060, (810) 982-3261 or 1000 DeGurse, Marine City, Mi. 48039, (810) 765-3300. Life Skills Development; Industrial Work Activity; Community Employment Program; Supported Community Living; Recreation; Advocacy; Transportation; Safety & Health. The Arc Is a national organization on mental retardation, committed to securing for all people with mental retardation the opportunity to choose & realize their goals of where and how they learn, live, work and play.
2. Family Information Exchange - Link Families involved in Early On Michigan. (800) 292-7851 x 114.
3. Family Support Network - If you would like to talk to another parent in Your area. (800) 359-3722.
4. Parent Empowerment Project - If your child has healthcare needs and you would like information or advocacy. (800) 262-0650.
5. Citizens Alliance To Uphold Special Education - If you need special education information or advocacy. (800) 221-9105.
6. Parent Leadership Program - If you want to become a parent leader. (800) 292-7851 x 107.
7. Supplemental Security Income - Provides financial assistance to families of elgible children with disabilities. (800) 772-1213.
8. Project P.E.R.F.O.R.M. - Resource Center for families of children with disabilities. (800) 552-4821. (Not Just for Down Syndrome - Excellent Source.)
9. Third Party Dispute Resolution - Family rights questions within the Early On program. Call Harold Spicknall at (888) 333-6606.
10. Children's Special Health Care Services - State program for children with mdeical health care needs. (800) 359-3722.
11. Fathers of Children with Special Needs Support Group - United Cerebral Palsy Association of Detroit. (810) 557-5070. Also, a Parent support group is available.
12. Eton Academy - Educate students with learning disabilities to learn their learning style and practice strategies that will prepare them for life. (248) 642-1150.
13. Michigan Federated Chapters of the Council For Exceptional Children - Dr. Gene Kyle, 6721 Victoria Shore Drive, Laingsburg, Michigan, 48848.
14. Harbor Center - ADD/ADHD
Intervention Program. Attention Deficit Disorder Program to help
build your skills and reduce behaviors, teach life skills and academic
remediation. (810) 469-0651.
E-MAIL at: robeng@ix.netcom.com