An Overview of Angelman Syndrome Resources Available on the Internet

Presentations at the 1st World Conference IASO - Tampere, Finland, 4-8 July, 2000
Presented by: Frank van Hof*, The Netherlands - Heikki Taimio, Finland

Web Sites

Only four years ago, in 1996, there was just one web site providing general information about Angelman syndrome, and there was the mailing list for parents and caregivers. Now there are many more sites, and several additional mailing lists where people can find information about Angelman syndrome. It may therefore be helpful to present a list of most of those sites with a short description of their contents.

A second list we compiled is an attempt to present those sites by category. It is tempting to also rate the value of the sites, to make it easier to distinguish the really interesting sites from others. The rating of web sites, however, would explain more about the one who does the rating than the sites themselves. What may be very interesting to me, you may find of no interest at all and vice versa.

A list of links to the web sites discussed below is available here on the IASO Website.

Descriptive List

The IASO site at the present time contains only information about this organisation and presentations from the World Conference.

Several national Angelman Syndrome associations already have their own web sites.

The American Angelman Syndrome Foundation's site is a compact information center about the activities of the ASF and links to other national groups. It also presents concise information for parents and professionals.

John Hannaford manages the website of the Australian Angelman Syndrome Association, featuring general information about AS and a Parental Experiences section.

Other sites of national associations include Brazil, Canada, Denmark, Finland, France, Germany, Italy, Norway, Spain and the UK.

In addition several individuals have constructed web sites which present various general resources and/or some special topics. Among the general resource sites are the following:

Harold Anderson's main page has a collection of links to all sorts of web sites dealing with AS, many of them scientific in nature, and a subcategory links to other general sites. It is clear already that the general sites have many circular links and present the same information. Harold's site, however, distinguishes itself from others by hosting the Angel web chat and "Paul's FTP site", an archive of email sent to the AS mailing list sorted by subject. There is also an automatic email responder where requesting information is only a matter of clicking the right link and sending an email message. There is a Member's list of parents one can join. Harold also hosts the IASO site.

Dan Harvey's site contains an interesting mixture of links. The site is especially valuable for the scientific information about the genetics of AS and the links to scientific articles and surveys about sleep treatment, Angelman Syndrome Epilepsy Information, Communication Skills and other matters of great interest to those dealing with AS.

Julie Hyman's site is one of the largest and oldest sites about AS. The part that is perhaps of the most interest is the ''Everything you ever wanted to know about Angelman Syndrome...'' section. Here in an A to Z format many keywords pertaining to AS are discussed. The other sections contain newspaper and magazine articles about AS, poems and essays, voices of awareness, and a large collection of links to AS resources, AS organisations, mailing lists and web sites.

Michel and Lori Marcotte's site is remarkable because it is in 5 languages, French, English, German, Spanish and Portuguese. There are useful bibliographies of scientific articles about AS, one by theme, one by language, one all articles, and links to other sites with bibliographies.

Juan José Palomares manages a large Spanish site, containing information about national organisations in Spanish-speaking countries, conference information, information about mailing lists and a section about Juan's daughter Elena.

Frank van Hof's general site is available in Dutch and English. There is a large picture gallery of subscribers to the mailing list and their children and a document by Martha Sprowles for newly diagnosed parents.

Hironao Numabe manages a Japanese site.

There are several family-oriented sites which typically also contain some special features and links to other sites. These sites are hosted by Adrian Altona, Marc Bissonnette, Cheryl Briggs, Tracy Carreola, Susie Cato, Randall and Jennifer Kirby, Melissa and Steve Kushner, Angela Lindig, Gerard and Susanna Piper, Michael and Carmel Schroeter, Beth and Tom Sturr, Bonnie Sykes, Helge Volland, Paul Webster, Mary Williams and Oleda Wingo.

Categorized List

Any newcomer to Angelman syndrome, whether caregiver or professional, would like to start with some very basic information, such as the two handouts on the ASF site. Martha Sprowles has written a leaflet specifically for families with newly diagnosed children. The short but somewhat outdated review by John Miles, another one by Michel Marcotte and the Parent's Guide by Lynn Miller, also available in French and German, may also be taken as basic information. An Obituary of Dr. Harry Angelman can be found on Julie Hyman's site.

More detailed, general information is provided by the review by ASF's "Facts about Angelman Syndrome", by the Special Child Magazine, by Dr. Walter Camargos and his associates, and by Dr. Jill Clayton-Smith in her "Angelman Syndrome in Adulthood".

Dr. Charles A. Williams gives a short introduction into the genetics of AS in his "Genetics 101 of Angelman Syndrome", and Livija Celle has written an article on "The UBE3A Gene and its Role in Angelman Syndrome".

The first edition of "Angelman Syndrome from A to Z" by Alice Evans and Julie Hyman has been followed by the 2nd edition, which is now for sale. Beth Sturr has written another practical guide, "Hints and Ideas for Everyday Living for Parents of Angelman Children" which is also introduced at this conference. Carmel and Michael Schroeter also provide some practical ideas and resources.

Other useful special articles include "Promoting Social Inclusion Of A Child With Angelman Syndrome Through Peer Participation" by Deborah Samuels, "A Survey of Expressive Communication Skills in Children with Angelman Syndrome" by Robin Alvares and Sharon Downing, ", and "Seizures in Children with Angelman Syndrome" by Dr. H. Terry Hutchison. The two last mentioned articles will be updated at this conference.

Many parents and caregivers will want to read the Poems and Essays on Julie Hyman's site, and there are also picture galleries of Angelman families on Frank van Hof's and Dan Harvey's sites.

Proceeding now to medical science, the uninitiated may first want to study some genetics by reading a "Primer on Molecular Genetics" and "The Science Behind the Human Genome Project" as well as Dan Harvey's "Genetics of Angelman Syndrome".

Genetic reviews are given in the GeneClinics Review of Angelman Syndrome and in the entry on Angelman Syndrome in the Online Mendelian Inheritance in Man (OMIM) database. There is also an OMIM Review of the UBE3A gene.

The current consensus diagnostic criteria are available on the ASF site. Authoritative statements on genetic testing are provided by the American Society of Human Genetics/American College of Medical Genetics Test and Technology Transfer Committee and by the European Molecular Genetics Quality Network.

Almost all scientific articles on AS can be found by typing Angelman at the Public Medline Search site. Michel Marcotte has complied an extensive bibliography.

The following two examples illustrate how one can go about searching for any specific type of information on AS:

To search for information about genetic counselling, that is, the likelihood of having another child with AS, you should start with "Facts about Angelman Syndrome" on the ASF site, and also take a look at Dr. Charles Williams' "Genetics 101 of Angelman Syndrome". If you are comfortable with more technical, scientific approach, you can go to the GeneClinics Review of Angelman Syndrome by Charles Williams, Dan Driscoll and A.C. Lossie, and finally, search for articles on the Public Medline Search site.

If you are interested in Alternative and Augmentative Communication (AAC), thenfrom "Facts about Angelman Syndrome" you will learn that children with AS cannot speak, so that they should have access to other methods of communication. You may then read the article by Robin Alvares and Sharon Downing, "A Survey of Expressive Communication Skills in Children with Angelman Syndrome", and you find some practical tips in Beth Sturr's "Hints and Ideas for Everyday Living for Parents of Angelman Children".

It is by now clear that those who look for information about AS and have access to the Internet can find everything they are looking for and that every kind of support and practical information can be found. However, a better organisation of the links to information on AS would be highly beneficial to parents and professionals alike. This is what we have done do the IASO website.

Mailing Lists

There are several mailing lists dealing with AS, and they share some basic principles. One subscribes by sending an email to a certain email address and including some coded message, which leads to an automatic subscription, and by typing another coded message one can unsubscribe. When one subscribes to a list, a message is sent confirming the subscription and containing important information on how to post messages, unsubscribe and other issues regarding that list.

The subscribers receive all the messages that are sent to the email address of the listserv. They can reply to a message specifying the email address of the listserv, this reply is then again sent to all subscribers, or to the individual sender of a particular message.

Mailing List for Parents and Carers

The list that generates the most traffic by far is the mailing list for parents and caregivers. Every possible issue regarding living with an A.S. person is discussed here. Some subject lines from a few days worth of messages may give an impression of the variety of topics discussed:

At present, an average of 30-40 messages are sent to the subscribers per day. For many, this is too much to read. It is important that the topic of the message is clear from the subject line so that those interested in that topic may read the message while others can skip it.

The messages to the AS mailing list are also available in digest form. Subscribers receive one email message containing all of the messages of the day. At the beginning of June, 2000, the total number of email addresses subscribed to this list was 559. Angelman mailing list archives can be found at eGroups and at Paul Cate's FTP site, but the eGroups archive was discontinued in July, 2000.

Angelpro Mailing List

The Angelpro mailing list is intended for professionals involved with AS. Those who wish to subscribe should send an email message to Dan Harvey in which they state their profession and the reason why they wish to subscribe. Another option is to subscribe by filling in a form on Dan's website.

IASO Mailing List

The IASO mailing list is also a specialized mailing list, but open to everyone with an interest in the IASO.

Angelsearch List

The Angelsearch mailing list is for parents with undiagnosed children who are suspected of having AS. The exact aim is "To facilitate communication among Angelman syndrome families whose children are in the quadruple-non category."

Mailing lists in Other Languages

There are also mailing lists for caregivers in Finnish, French, Portuguese, Spanish and Swedish, perhaps in other languages, too.

Discussion

There is always a lot of discussion on the mailing list for parents and caregivers, whereas the Angelpro and IASO mailing lists have virtually no traffic at all. One might think that this difference is due to the great number of subscribers to the parents' list, but in fact, the number of daily messages was high also 4 years ago when it had even fewer subscribers than the Angelpro list today. A higher proportion of members on the parents' list come from a single country, the USA, which may play a role. This "geographical bias" may also stem from the use of the English language combined with the high rate of Internet penetration in the U.S., and perhaps with the willingness of Americans to discuss openly all matters related to their children.

However, we think that the success of the parents' list is mainly due to the fact that, unlike professionals, parents like to share emotions and experiences, and they want to ask if anyone has found a practical solution to a problem. The professionals know how little is known about AS, and scientists may not want to share details of their ongoing research projects. A critical number of subscribers may also be required, because we have heard about national AS-related parents' mailing lists with few subscibers that have failed to initiate any discussion.

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