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 Disability Information - Angelman Syndrome

 

General Information

Education & Classroom Accommodations

Michigan Resources, Support Groups, Listservs & Websites

National Resources & Websites

Articles Related to this Disability

Medical Information

Personal Home Pages

Books & Videos

 

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 General Information

 

Angelman Syndrome

Angelman syndrome is a neurological disorder characterized by severe congenital mental retardation, unusual facial appearance, and muscular abnormalities.

 

Symptoms of Angelman syndrome include unstable jerky gait, hand flapping, unusually happy demeanor, developmental delay, lack of or diminished speech, and microcephaly (small head). Epilepsy may develop in the early years of life, however it may decrease with age. Patients may also have balance problems.

Is there any treatment?

There is no standard course of treatment for Angelman syndrome. Physical therapy and adaptive devices may help patients with jerky gait. Early language evaluation and intervention is often recommended. Anticonvulsant medications may be prescribed for epilepsy.

What is the prognosis?

Most individuals with Angelman syndrome will have mental delay, severe speech limitations, and some type of gait abnormality. Patients may have improvement of symptoms with therapy.

From the National Institute of Neurological Disorders and Stroke, National Institutes of Health

 

The Facts About Angelman Syndrome

(by the Angelman Syndrome Foundation, Inc.)
http://www.angelman.org/BriefDesc.htm
A brief explanation of Angelman Syndrome.

 

What is Angelman Syndrome?

http://membres.lycos.fr/angelman/index-2.htm

Angelman Syndrome is not a disease, but a neurogenetic condition that cannot be cured, due to an anomaly on the maternal side of chromosome 15 (the half inherited from the mother).

Angelman Syndrome
Written by Stephen M. Edelson, Ph.D.
http://www.autism.org/angel.html
Angelman Syndrome is not considered a subtype of autism, but individuals suffering from this disorder exhibit many behaviors characteristic of autism. They are also sometimes given a secondary diagnosis of autism.

Army of Angels
http://www.armyofangels.org/
This site is here to do one of many small parts towards making the general public more aware of Angelman Syndrome in particular and genetic disorders in general. It is hoped that you will leave this site with a little more understanding of what Angelman Syndrome is and what you, a member of the global community, can help to do about it.

Angelman Syndrome Information
http://people.zeelandnet.nl/fhof/angelman/asi.htm

 

A Parents Brochure for Parents
http://www.armyofangels.org/angelessay.html
Practical advice from a parent.

 

Angelman Syndrome From A to Z

http://home.earthlink.net/~julhyman/atoz/atoz_home.htm

Everything you ever wanted to know about Angelman Syndrome... and then some!

 

Touched by an Angel

http://www.angelman.org/touched_by_an_angel.htm

 

Angeland

http://www.angeland.org/Angeland_Home.html

Welcome to Angeland. This is a place for brothers and sisters of kids with Angelman Syndrome to come and play. Stephanie Briggs and her mother have worked hard to make sure you have fun. You can learn more about Stephanie and other brothers and sisters later.

 

How common is Angelman Syndrome?
By Charles Williams, MD

http://www.angelman.org/ASIncidenceStats.htm

The answer to this question is not precisely known but we do have some rough estimates.  The best data thus far come from studies of school age children, ages 6-13 years, living in Sweden, and from Denmark where the diagnosis of AS children in medical clinics was compared to an 8 year period of about 45,000 births.

 

Disorder Zone - Angelman Syndrome

http://www.specialchild.com/archives/dz-001.html

 

Who Named It? Angelman Syndrome

http://www.whonamedit.com/synd.cfm/225.html

 

Angelman Syndrome National Walk-A-Thon

http://www.angelmanwalk.org/

It is a goal of the Angelman Syndrome Walk-A-Thon to raise awareness of this genetic disorder by educating the public (i.e., medical community, educators, individuals) regarding Angelman Syndrome, its signs, symptoms, characteristics, diagnosis, treatments and research.

 

Art for Angels

http://www.redimat.com/artforangels/index.html

Art for Angels is raising money to sponsor children with Angelman Syndrome in a new clinical study at San Diego Children's Hospital.

 

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 Education & Classroom Accommodations

 

Angelman Syndrome Handout on Education

http://www.angelman.org/aseduc.htm

Here are a few educational ideas for your child. This is a simple run down of your options, and each should be investigated thoroughly in your area. Other parents can be a great source of information and offer a wide range of opinions, so ask questions.

 

Hints and Ideas for Everyday Living for Parents of Angelman Children
http://home.att.net/~tomsturr/wsb/main.htm
The information presented here was originally presented at the July 5th, 1997 Seattle ASF Conference by Beth Sturr.

 

Angelman Syndrome Self Help Skills

http://www.angelman.org/asselfhelp.htm

One of the many issues we face as a parent or caregiver of a person with Angelman Syndrome is where do we start teaching our children, and what do we teach them? People with Angelman Syndrome will always need long term care, but we want our children to be as independent as possible.

 

Idea's on Different Forms of Speech

http://www.geocities.com/candlecrazy_1999/Speech.html

 

Different Idea's on Therapy You Can Do At Home

http://www.geocities.com/candlecrazy_1999/therapies.html

 

Behavior Modification

http://www.geocities.com/candlecrazy_1999/behavior.html

 

Do 2 Learn

http://www.dotolearn.com/

...see, do and learn online. Activities to promote independence in individuals with special learning needs.

 

Exceptional Parent Magazine

http://www.eparent.com/

 

LD Online

http://www.ldonline.org/

 

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 Michigan Resources, Support Groups, Listservs & Websites

 

Angelman Syndrome Foundation - Michigan Chapter
http://home.att.net/~tomsturr/wsb/mich-asf.htm
State Reps: Suzy Gavin   248-788-0947 & Betsey Stacks   517-524-6108

 

Michigan Angels page
http://www.geocities.com/candlecrazy_1999/girlswebpage.html
The goal of this page is to educate and help people deal with Angelman Syndrome  on a daily basis. On this page you will find Education issues, Speech tips, respite help, therapy issues, Disability council for every state (states still being added) and behavior modification idea's.

 

Idea's on Respite For You and Your Family
by Emilie Mullins and Kathy Leonard
http://www.geocities.com/candlecrazy_1999/Respite.html
Since I am in Michigan I can only tell you about programs in my state. All of our respite care comes from our Community Mental Health Dept.  There are different types of respite available to families.

 

ASF Outreach and Educational Committee
http://www.geocities.com/candlecrazy_1999/Outreachpage.html
The goal of our committee is to educate professionals, and parents on Angelman Syndrome. We think it's not only important to educate the general public and professionals but also parents that have children with Angelman Syndrome. Here is al list of current activities of the committee.

 

Michigan Parents of Children with Angelman Syndrome
Having kids with Angelman Syndrome is an ongoing battle sometimes and it really helps having a shoulder to lean on (or cry on) with someone who understands. All the parents I have spoken to have been more than happy to help, so if you need advice or anything please e-mail me and we will work on it!
Emilie Mullins -  Click here to E-mail Emilie
Kathy Leonard - Click here to E-mail Kathy 

 

Michigan Online Support Group - Angelman Syndrome!!
http://groups.msn.com/AngelmanSyndrome/_homepage.msnw?pgmarket=en-us

Join us every Wednesday night for a live chat. Get advice, or just come to talk!

 

Medical Genetics clinic
Department of Internal Medicine, University of Michigan Health System
http://www.medgen.med.umich.edu/clinic/mgc_info

 

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 National Resources & Websites

 

Nina Foundation

http://www.nina-foundation.org/

 

Angelman Syndrome Forum & Instant Chat
http://angelmanforum.org
Join others in discussing and sharing information about Angelman Syndrome.

 

Angelman Syndrome Foundation, Inc.
http://www.angelman.org/
Information about Angelman Syndrome and the Foundation for doctors and families.

 

International Angelman Syndrome Organization (IASO)

http://www.international.angelmansyndrome.org/

The IASO was founded as a world-wide 'umbrella' organization of national Angelman syndrome associations. It is politically neutral, with no discrimination as to race, sex, color or religion, and is non-profit-making. One of its main duties is to help translate and distribute written material on AS in several languages.

 

Australian Angelman Syndrome Association

http://www.angelmansyndrome.org/

 

The Canadian Angelman Syndrome Society

http://www.angelmancanada.org/

The Canadian Angelman Syndrome Society is dedicated to educating parents and professionals about AS and disseminating information about it.

 

Norwegian Society for Angelman Syndrome

http://www.angelman.no/engindex.htm

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.

 

ASSERT Web Site

http://www.angelmanuk.org/

ASSERT is a United Kingdom based support group. We are all volunteers who have direct contact with people with Angelman Syndrome. The majority of the trustee's are parents or relatives of children or adults with Angelman Syndrome.

 

Families of Angelman Syndrome

http://groups.yahoo.com/group/familiesofangelmansyndrome/

Hi, Welcome to this Club where families and friends of those who have Angelman Syndrome can share and give each other support on raising a child with Angelman Syndrome.

 

Heavens angels Angelman Syndrome

http://groups.yahoo.com/group/heavensangelsangelmansyndrome/

Trials and Tribulations of parenting an angel.

 

Angelman Syndrome On-Line Discussion Group

ANGELMAN
A list for parents of children who have Angelman Syndrome
To subscribe send message to:
majordomo@morningstar.com
In the body of the message type:
Subscribe ANGELMAN
*Note: Digest Available

 

A.S.Listserve

http://www.assert.dial.pipex.com/

 

Angelman Syndrome Bulletin Board

http://www.vwcdexpo.com/bboard/mbs2.cfm?show=73
 

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 Articles Related to this Disability

 

Information is not available at this time.

 

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 Medical Information

 

NINDS Angelman Syndrome Information Page
http://www.ninds.nih.gov/health_and_medical/disorders/angelman.htm
From the: National Institute of Neurological Disorders and Stroke

 

OMIM Review of Angelman Syndrome

http://www3.ncbi.nlm.nih.gov/htbin-post/Omim/dispmim?105830

 

Gene Reviews - Angelman Syndrome

http://www.geneclinics.org/profiles/angelman/

Includes a summary, diagnosis information, clinical description, differential diagnosis, management, genetic counseling, molecular genetics, resources, references, and author information.

 

THE GENES INVOLVED IN PRADER-WILLI AND ANGELMAN SYNDROMES

http://zygote.swarthmore.edu/chrom3a.html

 

How Do You Test for Angelman Syndrome?
http://www.armyofangels.org/angeltest.htm
This is a list of the five most common methods of testing for Angelman
Syndrome.

 

Angelman Syndrome: Consensus for Diagnostic Criteria

From the American Journal of Medical Genetics

http://www.angelman.org/diagnostic_criteria.htm

 

Diagnostic Testing for Prader-Willi and Angelman Syndromes: Report of the ASHG/ACMG Test and Technology Transfer Committee

American Journal of Human Genetics

http://www.angelman.org/diagnostic_testing.htm

 

Summary of Genetics of Angelman Syndrome

http://www.angelman.org/twopgGenetic.htm

For several decades the chromosome study of AS individuals revealed no abnormalities, but with the development of improved methods a very small deleted area was found in chromosome 15.
 

Genetics 101 of Angelman Syndrome (by Charles A. Williams, M.D.)
http://www.asclepius.com/angel/genetics101.html
A listing of definitions, genetic testing definitions, and inheritance of
Angelman Syndrome.

 

Angelman Syndrome Photos
Page 1
http://www.asclepius.com/angel/phopag.html
Page 2
http://www.asclepius.com/angel/phopag2.html

Page 3

http://www.angelman.com.ar/fotos.html

Page 4

http://www.coastwebdesigns.com/asa/html/body_as_children.html

 

Summary of Clinical Features and Diagnosis of Angelman Syndrome

http://www.angelman.org/twopgClinical.htm

Describes Developmental and physical features, Developmental History and Laboratory Findings, and Consensus Criteria for Clinical Features in Angelman Syndrome.

 

Clinical Features of Angelman Syndrome

http://www.isn.net/~jypsy/angelman.htm

A list of consistent, frequent, and associated features of Angelman Syndrome.

 

Angelman Syndrome

Genes & Disease from the National Center for Biotechnology Information

http://www.ncbi.nlm.nih.gov/books/bv.fcgi?call=bv.View..ShowSection&rid=gnd.section.165

Describes the genetic basis for Angelman Syndrome.

 

Molecular Analysis of Angelman Syndrome

http://www.compgene.com/as.htm

 

SEIZURES IN CHILDREN WITH ANGELMAN SYNDROME

By H. Terry Hutchison, M.D., Ph.D.

http://www.angelman.org/seizures_in_children_with_as.htm

 

Study of Phenotype and Genotype Correlations in Patients With Contiguous Gene Deletion Syndromes

This study is currently recruiting patients. Click here!

To locate a genetic counselor or clinical geneticist in your area:

 

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 Personal Home Pages

H.E.L.P.!!!
Hints and ideas for Everyday Living for Parents of Angelman Children

http://www.bethsturr.com/

 

Angel Down Under
http://members.optusnet.com.au/~altona/
A story about Anthony & much much more useful information about Angelman Syndrome.

 

Heaven Must Be Missing An Angel
http://people.zeelandnet.nl/fhof/angelman.htm
A website created by a parent with loads of information, a mailing list, a photo gallery and links.

 

My Niece Shannon
http://www.asclepius.com/angel/shan.html
A touching story by Art & Dorothea Anderson.

 

Not All Angels Are In Heaven..

http://members.aol.com/Anjel401/

This page is dedicated to children with special needs and my daughter Chelsea. Chelsea was diagnosed with Angelman Syndrome at 18 months old.

 

Susie's Place

http://www.homestead.com/susiesplace/index.html

 

Spencer's Home Page

http://geocities.com/researchtriangle/lab/3057/

 

Matthew Williams Memorial Page

http://www.castlegate.net/matthew/index1.htm

 

An "Angels World"

http://members.tripod.com/lorfrevold/

For almost 13 years we were told that our son Jason had Cerebral Palsy and Microcephally.  According to his doctor, there was no other explanation for his condition   In my heart I knew something just did not ring true with that.  One day I woke up and decided I wanted to play hooky from work and take some time for myself.  That day, be it fate or luck,  gave us the answer we were searching for.

 

Angelman Syndrome: Matthew’s Story

http://logosresourcepages.org/matthews.htm

Let us introduce you to our son Matthew. He is a special little boy because God allowed Matthew to have a genetic disorder by the name of "Angelman Syndrome". Angelman Syndrome is often misdiagnosed as cerebral palsy or autism.

 

Our angel, Tyler Davis -- an Angelman's child

http://www.ourangeltyler.com/

Tyler Davis, on November 10, a few days after his second birthday. Earlier in 2002, Tyler was diagnosed with Angelman Syndrome, a genetic disorder that you'll learn more about at this website or by using the links we provide on the "Web Links" page. We've just posted eleven new pictures on the "Photos" page for family and friends to enjoy.

 

Kirstie's Angelman Syndrome Page

http://www.users.bigpond.com/websterpaul/KirstiesPage.htm

 

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 Books and Videos

 

"Angelman Syndrome From A to Z"

by Alice Evans & Julie Hyman

http://home.earthlink.net/~julhyman/atoz/atoz_home.htm

http://www.eplibrary.com/angleman/

A compilation of tips, hints, and ideas on how to survive and enjoy daily life with a child with Angelman Syndrome. The collection of ideas come from parents, teachers, siblings and care givers of people with Angelman Syndrome from around the world.

 

The Man Who Would Be Dad

by Hogan Hilling
http://www.eplibrary.com/angleman/

This story begins when Hogan and his wife's second child, Wesley, was born with Angelman Syndrome, a rare genetic disorder. In this book the author confronts the question of "What is a real dad?" The answers are loud and clear; caring, playful, affectionate, and fully committed. In simple, eloquent, and knowing stories, the author, lets the reader understand that when it comes to raising kids, men only have one choice --be involved! it is not a chore, but a choice made out of love.

 

Angel Lady
by Ashleigh Evans

http://www.amazon.com/exec/obidos/ASIN/0964941929/expertparentscom/104-6535244-4763104

A children's book about a child with Angelman Syndrome. Takes four to six weeks from Amazon.

 

Living with Genetic Syndromes Associated with Intellectual Disability
by Marga Hogenboom
http://search.barnesandnoble.com/booksearch/isbnInquiry.asp?userid=

2VNFOXDLOW&isbn=185302984X&itm=1185302984X&itm=1

 

Prader-Willi Syndrome and Other Chromosome 15q Deletion Disorders
by Suzanne B. Cassidy

http://search.barnesandnoble.com/booksearch/isbnInquiry.asp?userid=

2VNFOXDLOW&isbn=0387530959&itm=20387530959&itm=2

 

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