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IASO Board Members President - Mrs. Simone Kennedy, Australia Simone Kennedy is the mother of three children: Andrew (AS del+, b. 1988), Emma (b. 1990) and Renee (b. 1994). Simone is currently the President of the Australian Angelman Syndrome Association, a position she has held since 1995. She was one of 3 parents instrumental in the formation of the Australian Angelman Syndrome Association in 1993. Simone is often
the first contact many new AS families have in Australia and
with husband Kevin, produces and edits the Australian newsletter.
Simone was a member of the first meeting of the IASO in Ottawa,
Canada in 1998 and was elected to the first IASO board. She works
part-time as a primary school teacher and lives in Engadine,
Sydney, Australia. Vice-President - Mr. Heikki Taimio, Finland Heikki Taimio
is father of two girls - Liisa (AS, b. 1990) and Annina (b. 1986).
He was the first President of the Finnish Angelman Syndrome Society
(FASS) in 1997-98. He was a member of the IASO Working Group
which was set up at the ASF Conference in Seattle, July 1997,
and which prepared the first meeting of the IASO in Ottawa, Canada,
in August, 1998. He has served as the Vice-President of the IASO
since that meeting. Heikki also chaired the National Organising
Committee of the 1st World Conference of the IASO in Tampere,
Finland, from 4-8 July, 2000. He is a university economist by
profession and lives in Joensuu, eastern Finland Mr. Juan José Palomares, Spain Juan José Palomares
is the father of four children: Juan José (b. 1977), Elena
(AS del+ b. 1984), Daniel (b. 1992) and Cristina (b. 1993). His
wife, María, is a member of the board of the Spanish Angelman
Syndrome Association. He is webmaster of the Spanish website
on Angelman Syndrome, as well as of the Spanish website of the
IASO. He is a board member of New Horizon. Professionally. He
is an engineer, working in the field of the new technologies,
and lives in Madrid (Spain). Ms. Melanie Barton, Germany Melanie Barton is the mother of a boy - Maxwell (AS, b. 1995). Since 1999 she is the Vice-President of the German AS group and is the editor of its newsletter. She was a member of the Programme Committee of the first World Conference of the IASO. Melanie had been
working and is now working again as a personal assistant (marketing
and sales) in international companies using her different language
skills. She lives in Aachen, Germany close to the border to Belgium
and Holland. Dr. Arabella Smith - Australia Arabella (Ellie) Smith is Senior Staff Specialist and Associate Head at the Department of Cytogenetics of the New Children's Hospital, Westmead, Australia. Following graduation Ellie undertook a lengthy 15 year period of part-time work (to accommodate family - 4 daughters) at the (then) Oliver Latham Laboratory, NSW Department of Health (1970-1985). The work here firstly involved the newborn screening program and then from 1979, cytogenetics. Postgraduate qualifications were obtained in the UK in 1988 with the Diploma in Clinical Cytogenetics and Molecular Genetics (DipRCPath), Human Genetics Society of Australasia Certification in Clinical Cytogenetics in 1989 (HGSACC) and the Royal College of Pathologists, Australasia in 1990 (FRCPA). Major research
interests, including two 5-year NH&MRC Grants, have involved
Prader-Willi Syndrome (PWS) and Angelman Syndrome (AS). She has
over 100 original publications in reputable medical journals.
Ellie currently works as Senior Staff Specialist in Cytogenetics
at the New Children's Hospital, Westmead and is particularly
responsible for the oncology and FISH (new technology) sections.
She is honorary Professional Adviser for the Australian PWS Association,
Board Member of the International PWS Organisation, Professional
Consultant for the ASA (Angelman Syndrome Association of Australia),
on the Board of the IASO (International Angelman Syndrome Organisation)
and Friend of the Microscopical Society of Australia (Vice-President
1993-1998). Ellie is the founder and a Past-President of the
Australasian Society of Cytogeneticists and a Past-President
of the Medical Women's Society of NSW. She was Convenor for Health
for National Council of Women 1992-1995,1997-1998 and Adviser
on Health and Nutrition 1997-1999. As of now, she has 5 grandchildren. Mrs. Sally Walburn - U.K. Sally Walburn
is mother of of two girls: Rachel (b.1985) and Laura (b.1987)
and one son, Matthew (b. 1991 del+). She is wife and Company
Secretary to Ken, who is also a trustee of ASSERT. In her spare
time, she runs a local support group for families of children
with special needs and is actively involved in local issues.
Sally is the Chairperson of ASSERT (Angelman Syndrome Support
and Education Research Trust) in the UK. She takes an active
role on the telephone support line, writes and edits the ASSERT
Report, and has recently chaired the First National ASSERT Conference
in September, 2000. Sally was a member of the first meeting of
the of the IASO in Ottawa, Canada, in August, 1998. She lives
in Basildon in Essex (near London). Mrs. Vibeke Nicolaisen - Denmark Vibeke Nicolaisen is the mother of three: Lulu (b. 1985), Mark (del +, b. 1988) and Katryn (b. 1994). She is married to Kris, who is President of the Danish Angelman Association. She is newsletter editor and webmaster for the Danish AS website and in her spare time she is secretary and mind-reader to Kris. Vibeke took the
first initiative for the establishment of the Danish Angelman
Association in 1994 (the Association was founded in 1995), and
she chaired the Programme Committee of the 1st World Conference
of the IASO. She is a correspondent by profession and lives in
the countryside, 60 km south of Copenhagen, Denmark. Mr. Ivano Pillon - Italy Ivano Pillon
is father of two children: Andrea (b.1985) and Sara (AS del+,
b.1989). With his wife Raffaella, he was one of the founders
and first President of the Organizzazione Sindrome di Angelman
(OR.S.A. founded in 1996) and to this day, remains the President.
Ivano is often the first contact many new AS families have in
Italy. He produces and edits the Italian newsletter. Professionally,
he is a dealer of products for the automation industry and he
lives in Treviso, in Veneto (near Venice). Dr. Charles Williams - USA Charles Williams, M.D. is a Professor of Pediatrics and Genetics, Department of Pediatrics. He is a native Floridian and has had a longstanding career at the University of Florida as he joined the university in 1978. He is a board-certified pediatrician and clinical geneticist and has a special interest in neurogenetic syndromes and related conditions. The main focus
of his research career has been in the study of Angelman syndrome.
Since 1982 he has published many papers on the genetic and medical
aspects of Angelman syndrome. In 1987 he was instrumental in
founding the USA Angelman Research Foundation which subsequently
evolved into the USA Angelman Syndrome Foundation. Mrs. Martha Sprowles - USA Martha Sprowles is mother of: Sara (b. 1985, atypical UPD) and John (b. 1983). She joined the ASF shortly after Sara was diagnosed in 1994 and was Chairperson of the Program Committee for the 1999 ASF Conference in Cherry Hill, NJ, USA. She worked on the Program Committee for the first IASO Conference in Tampere, Finland, in July 2000. Martha is a local
contact for parents with newly diagnosed AS and is an educational
activist in her local school. She is a Writer by training and
lives in New Hope, PA, USA.
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