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  Specific Disorders 

If you know of resources which would be appropriately listed here please let us know.

Multiple Sclerosis

natl-ms-logo.gif (2119 bytes)The National Multiple Sclerosis Society  (NMSS) is the U.S. MS Society dedicated to ending the devastating effects of multiple sclerosis. The NMSS is the only national voluntary MS organization that meets the standards of ALL major agencies that rate non-profit groups. The NMSS supports more MS research and serves more people with MS than any national voluntary MS organization in the world.  The Georgia Chapter of the NMSS provides local services to residents of Georgia. 

int'l-ms-logo.gif (2550 bytes)The International Federation of Multiple Sclerosis Societies (IFMSS) is a non-governmental, non-profit making voluntary health agency and umbrella organization for the 36 established national MS member societies throughout the world. One of the major IFMSS objectives is to serve as a clearing house for educational and scientific information about MS. The World of Multiple Sclerosis on the Internet uniquely provides a vehicle to facilitate the realization of this goal through providing the highest quality information in a wide range of languages and by providing links to all National MS Societies that have a presence on the web..


Rare Disorders

logo-ord.gif (2818 bytes)The U.S. National Institutes of Health Office of Rare Diseases offers a Rare Diseases Clinical Research Database and other services. Here you can find information on more than 6000 rare diseases, including current research, publications from scientific and medical journals, completed research, and even patient support groups.  There is even a database on ongoing research at every phase of the process from Requests for Proposals to Clinical Trials.

The National Organization of Rare Disorders (NORD) is the only organization of its kind--a unique federation of more than 140 not-for-profit voluntary health organizations serving people with rare disorders and disabilities. Thousands of affected individuals and their families--as well as support groups, health care and human service professionals, and advocates for people with rare disorders and disabilities--rely on NORD's assistance and leadership. NORD is a charity and continues its mission through the kindness and generosity of its our donors.

Rare Genetic Diseases In Children is an Internet jump-station to sources of information on rare genetic diseases affecting children run under the aegis of NYU Medical Center.


Mental Retardation

AAMR-Logo3.jpg (9224 bytes)The American Association on Mental Retardation is the oldest and largest interdisciplinary organization of professionals (and others) concerned about mental retardation and related disabilities. Over 9,500 members in the U.S. and 55 other countries have chosen AAMR as their association.  AAMR's mission is to advance the knowledge and skills of professionals in the field of mental retardation by exchanging information and ideas.  AAMR therefore publishes "The American Journal on Mental Retardation (AJMR) [which] is the leader in reporting original, quality research in biological, behavioral, and educational sciences for researchers, clinicians, and students in mental retardation and related disabilities."

The Arc (formerly Association for Retarded Citizens of the United States) is the country's largest voluntary organization committed to the welfare of all children and adults with mental retardation and their families. The Arc is a 501( c)(3) charitable non-profit organization supported by contributions from the general public. The Arc, with its rich history in advocacy and services, is comprised of individuals with mental retardation, family members, professionals in the field of disability and other concerned citizens. The Arc has adopted various positions on issues that affect people with mental retardation and their families, and the organization's mission statement forms the basis for the organization's activities.


Down Syndrome

Down Syndrome Association of Atlanta (DSAA) was created by metro-Atlanta parents in 1979 in an effort to provide support and education to families who had children with Down syndrome. They are a source of information and support to families, work to promote public awareness and encouraging a better understanding of Down syndrome and individuals with Down syndrome.  They rely solely on donations, member dues and fundraisers to continue their work for the community.  They hold an bi-annual conference, publish a bi-monthly newsletter, and provide financial support to parent groups affiliated with DSAA.

The National Association for Down Syndrome (NADS) is a strong network of support systems with medical, educational, vocational, and social service professionals who work with children and adults who have Down syndrome.   "We serve children and adults with Down syndrome, siblings & families, and medical & educational professionals. Our services include parent support services, audio/visual presentations, seminars, conferences and research reports.  We also produce several products that are available for purchase.  These include our popular "Don't Be Surprised" posters, educational videotapes & pamphlets, and our NADS Aerobics tape.  Membership dues and contributions enable NADS to provide our many services. As a member, you will also receive our bi-monthly newsletter and notices of special events & seminars."

The National Down Syndrome Society was established in 1979 to increase public awareness about Down syndrome; to assist families in addressing the needs of children born with this genetic condition; and to sponsor and encourage scientific research. Today, NDSS supports young researchers seeking the causes of, and answers to, many of the medical, genetic, behavioral and learning problems associated with Down syndrome; sponsors internationally renowned scientific symposia; advocates on behalf of families and individuals affected by this condition; provides information and referral services through its toll-free number; and develops educational materials, many of which are distributed free of charge.


Fetal Alcohol Syndrome (FAS)

The National Organization On Fetal Alcohol Syndrome (NOFAS) is a 501-(c)(3) nonprofit organization founded in 1990 dedicated to eliminating birth defects caused by alcohol consumption during pregnancy and improving the quality of life for those individuals and families affected. All of NOFAS's work is dedicated to spreading the message that drinking and pregnancy do not mix. The U.S. Surgeon General advocates complete abstention from alcohol during pregnancy; no research to date has established a safe level of alcohol.

The University of Washington School of Medicine Fetal Alcohol and Drug Unit is a research unit dedicated to the prevention, intervention and treatment of Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE).  They provide info on their research projects and findings,  have a list of support groups worldwide, list international FAS/E conferences as they come up, and are also the home of the Fetal Alcohol Syndrome/Effects Legal Issues Resource Center.

The Arc's FAS Resource and Materials Guide: An extensive listing of Fetal Alcohol Syndrome resources. Topics include: General/overview materials, Medical materials, Identification and Diagnosis, Research, Prevention Campaign materials, Families with FAS children, Instructional materials, and Funding.

Fetal Alcohol Support Network A dozen lengthy articles on various aspects of FAS, especially educational issues. Also a listing of 250 abstracts of articles on FAS/FAE research.

The National Academy Press has published "Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment" by the Committee to Study Fetal Alcohol Syndrome and has the publication available online.

What the U.S. Centers for Disease Control is doing to Prevent Fetal Alcohol Syndrome and Other Alcohol-Related Developmental Disabilities is available online.


Landau-Kleffner Syndrome (LKS)

Massachusetts General Hospital runs a series of Bulletin Boards and Chat Rooms on Neurology topics. These sites are frequented primarily by parents and patients with minimal input from the physicians at MGH.  There is a fair level of ongoing discussion and support available on the LKS Bulletin Board site.

FOLKS!  "Welcome to Friends of Landau-Kleffner Syndrome!  We are the UK support group and national charity for children with Landau-Kleffner Syndrome, their families and interested professionals.  The story so far:  FOLKS was established following several years of hard work and dedication by its founder member, Vicki Horsewell. Vicki established the Landau Kleffner UK Parent Support Group with the assistance of the UK national charity Contact-a-Family, which seeks to support families of children with rare conditions by putting them in touch with other similarly affected families. After two years it become clear that the number of families of children with LKS or related conditions in the UK has risen to mean that a national group centred around these children's needs was possible. Therefore a group of concerned parents and professionals, who had been involved in the support group, formally asked the Charity Commission to register FOLKS as a national charity for children with LKS. The Parent Support Group was then registered as a charity in its own right under the name FOLKS in November 1996."  They maintain a basic questions page on LKS and a page on Speech Therapy and LKS.   Additionally, they run a listserv on LKS with information available on joining located on their webpages.

Teacch has a review of seizure disorders in the Autisitc population that includes information on LKS available on their website.


Mucopolysaccharidosis (MPS)

The National MPS Society now has a membership of 780 with approximately 380 members having an affected child or children. Their website has information on the various forms of MPS and they also have a research fund set up which has granted Summer Research Fellowships and the plan is for this being a continuous program.  "Our ultimate goal, in addition to being a support group, is to increase our participation by regions, support research into areas such as carrier detection, early diagnosis, bone marrow transplantation, gene therapy and hopefully to the eventual finding of a cure."

The Canadian Society for Mucopolysaccharide & Related Disease was formed to alleviate the isolation felt by MPS parents. "When diagnosis is first made, parents often with to meet with or at least speak to someone who has shared their experience. Our organization attempts to facilitate contact where desired by the family. We have set up a register of families and the degree of involvement they desire and from this we introduce families to others in an area as close as possible.  By means of a newsletter we aim to keep up to date on current research and share family experiences. Our second aim is to bring about more public awareness of MPS diseases. Our third aim is to raise funds for research. We would like to start more research into MPS diseases in Canada."

The Children's Medical Research Foundation, Inc. "Our goal is to create awareness of Sanfilippo and other Neuro-genetic disorders, fund medical research and find a cure. We are a private, 501 (c) (3) charitable corporation so your gift is tax deductible. With your help Kirby and thousands of others will beat the odds."


Prader-Willi Syndrome

The Prader-Willi Foundation, Inc., is a major national not-for-profit public charity that works for the benefit of individuals with Prader-Willi syndrome and their families, as well as professionals in all fields who work with the PWS population.

The Prader-Willi Syndrome Association "was organized in the United States in 1975 to serve as an international vehicle of communication about Prader-Willi syndrome (PWS), a genetically based developmental disability. Now operating as PWSA (USA), this national membership association dedicated to Prader-Willi syndrome has as its stated mission: to provide to parents and professionals a national and international network of information, support services, and research endeavors to expressly meet the needs of affected children and adults and their families."

Angelman Syndrome

Angelman Syndrome Foundation "Angelman Syndrome is a neurological disorder associated with mental and developmental delay, characteristic facial appearance (protruding tongue and jaw, frequent smiling), excessive laughing, microbrachycephaly, abnormal electroencephalograms, seizures, sleep disorder, hypermotoric behavior, and jerky ataxic gait; this Foundation is established to pursue the objectives and purposes as follows: (1) Education: (2) Support and Advocacy: (3) Research: and (4) Fundraising."

Angel Down Under: "Angelman Syndrome was first discovered by Dr Harry Angelman in 1965, research has always been on going since then, but it has not been until 1978-88 when DNA testing came more refined, that diagnosis became easier.  There are a lot of men, women and children undiagnosed in the world, and it is the aim of our homepage and other homepages scattered around the world, to make Angelman Syndrome well known to the general population, so if you wish, please read Anthony's Story, or go to the Angelman Links page, where there is a wealth of information to be found."

The Australian Angelman Syndrome Association was founded on March 20,1993 at a meeting held at the St. George Hospital, Kogarah, NSW. The Association has blossomed since that time, mainly through the hard work of
dedicated parents of children with AS, with the guidance of medical professionals.

Angelman Syndrome: Information for Families & Professionals is a page of links and information pages for the family and interested professionals.

Norwegian Society for Angelman Syndrome (Norsk Forening for Angelman Syndrom): "The society shall work to improve the quality of life for persons with Angelman Syndrome (AS), as well as spread information about AS and act as a support to parents of persons with Angelman Syndrome."

Finnish Angelmans Syndrome (Angelmanin oireyhtymä): "Mikä on Angelmanin oireyhtymä? Mitä puuhaa ekaluokkalainen Justus? Kuinka nukkuminen sujuu? Miten tilapäishoito järjestetään? Tervetuloa sivuillemme! Angelman-lapsen vanhemmat alkavat yleensä huolestua lapsensa motorisen ja puheen kehityksen viivästymisestä ensimmäisestä ikävuodesta lähtien. Leikki-iässä Angelmanin oireyhtymälle (AS) tyypillinen käytös ja liikuntatapa auttavat diagnoosin selvittämisessä."

U.S. National Institutes of Health information on: ANGELMAN SYNDROME

Sturge-Weber Syndrome

The Sturge-Weber Foundation of the U.S.A. is a clearinghouse for information concerning Sturge-Weber Syndrome, Klippel Trenaunay Weber Syndrome, and Port Wine Stain Birthmarks. The Foundation provides support for parents and individuals with all three syndromes, educates the general public, medical profession, and government agencies, and funds research. The Foundation has local support groups and a directory in the form of area representatives and international resource contacts. The Sturge-Weber Foundation publishes a quarterly newsletter, Branching Out and has many articles, brochures and publications available including "SWS-A Kids Booklet," "Color Me Different-Color Me The Same," "Branching Out With Wisdom," a book of helpful hints from parents & grandparents, and a video "SWS-An Overview for Physicians and Families."  The Sturge-Weber Foundation offers a new parent packet that includes a copy of the newsletter, a pamphlet explaining Sturge-Weber Syndrome, a questionnaire, and a letter from the president of the Foundation. The Foundation collects information on physicians and researchers who treat/study the syndrome and make this information accessible to members. The Sturge-Weber Foundation hosts a national conference; call for further information.

Sturge-Weber Syndrome Support Group of New Zealand  was founded as a means of providing other families, interested parties or medical professionals in New Zealand with support, information and reference material on this condition.  The Objectives of the Support Group are:
1) To provide support & understanding for anyone dealing with SWS.
2) To provide reference material, contacts, leads and information for anyone dealing with SWS.
3) To link families within New Zealand with others who are dealing with SWS.
4) To gather information and support and petition the New Zealand Health Authorities to provide Laser treatment for Port-Wine Stains at no cost to the patient or the patients family. (Currently this is user-pays and may run up to tens of thousands of dollars)

Norwegian Foundation for Sturge-Weber syndrome (Norsk Forening for Sturge-Weber syndrom) NFSW is a national organisation founded in 1993 by private initiative.  The foundation is for everyone with the diagnose SWs and their  relatives. Others can become supporting members.   The foundation's goals :  Advising, informing, and helping people with SWs and their relatives.  Share knowledge about SWs to hospitals and institutions.   Emphasizing SWs special needs, and make the departments aware about their situation.  Information is available in Norwegian and English.

U.S. National Institutes of Health - Information on STURGE-WEBER SYNDROME


Cornelia de Lange Syndrome

The Cornelia de Lange Syndrome Foundation "is a nonprofit [501 (c) (3)] voluntary health organization based in Avon, Connecticut (USA). The Foundation provides a host of services that attract, educate, and unite families touched by this rare birth disorder which causes individuals to develop at a slower rate, both physically and mentally. The CdLS Foundation is a family support organization which exists to ensure early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS, and others with similar characteristics, make informed decisions throughout their lifetime."

Association du Française du Cornelia de Lange (CdLS-France)

  • atteindre, informer et rassembler les familles de personnes atteintes par le SCDL en France et pays
  • francophones voisins,
  • leur apporter écoute, aide et soutien,
  • sensibiliser l'entourage, le grand public, les professionnels et les pouvoirs publics aux spécificités du SCDL,
  • promouvoir la recherche médicale et éducative sur le syndrome et la diffuser le plus largement

Associazione Nazionale di Volontariato Cornelia de Lange (CdLS-Italy) Nel 1993 in Italia è nato un primo nucleo di genitori e a gennaio del 1997 è stata costituita l'Associazione Nazionale di Volontariato Cornelia de Lange, per permettere a tutte le famiglie che vivono questa realtà di confrontarsi e ricevere tutte le informazioni possibili sulla Sindrome. L'Associazione è costantemente in contatto con la Cornelia de Lange Syndrome Foundation, presente negli Stati Uniti con migliaia di iscritti edalla quale attingiamoogni novità sul piano della ricerca e della cura delle persone affette. Scopi principali: divulgare l'esistenza della Sindrome; tutelare in tutti i modi possibili le persone affette tenendosi sempre aggiornati sulle novità anche estere e promuovendo all'occorrenza leggi atte a migliorare le loro condizioni di vita; incoraggiare ed aiutare la preparazione di personale specializzato per la cura, l'educazione, l'assistenza e la riabilitazione anche con l'organizzazione ogni anno di un Congresso Nazionale; reperire i fondi necessari per svolgere tutte le attività.


Other Resources

Recovery Zone! is intended to be the most comprehensive resource on the Internet for information related to Discrete Trial Training to ameliorate the effects of autism on young children.

The Worldwide Congress on Pain link "has the very best and most current information on Pain and its' Management."  VERY heavily supported by pharmaceutical companies.

The Family Village Library   is a source for information about disabilities in language written for the family.   Their webpage on MPS is very useful and informative.  They have information on a wide variety of disabilities and other conditions.

 

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