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

                Stationery also available.  Ask a member.

11.  GrowthCharts

An excellent site for Children with down syndrome; growth charts (boys & girls).  Visit the website at:  http://www.growthcharts.com

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)

Disabilities
(including Down Syndrome)




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.oocities.org/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.oocities.org/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.oocities.org/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.oocities.org/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
 
 
 

Resource Center:

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