| General Program No. 1 (108 minutes) Presentation #1
In this DVD you will see the Art Gallery of work done by children with
Prader-Willi syndrome. It is a beautiful display of art work from children with
PWS from 12 different countries (4 minutes)
Presentation #2
The Welcome ceremony with Dr. Shuan Pei Lin. In this welcome you will hear about
IPWSO with its history and mission. (27 minutes)
Presentation #3
Janalee Heinemann (USA), Dr. Jan Forster (USA) and Giorgio Fornasier (Italy)
give tribute to Pam Eisen.
A heartwarming account of Pam’s dedication and mission with IPWSO, her love for
the children and their families. Also a beautiful song written by Pam and sung
by Giorgio about a little child with PWS who touched her heart. Pam truly is an
angel watching over all the little children and people with PWS. (40 minutes)
Presentation #4
Karen O’Reilly from New Zealand presents A New Mother’s Journey. A story of a
mother’s journey through a new diagnosis of her newborn until her children
turned 6 years old. (14 minutes)
Presentation #5
Dr. Driscoll presents Clinical Overview of PWS which gives a description of what
we can learn from genetic testing and the importance of a correct diagnosis. A
wonderful description of genetic tests available, genetic subtypes, PWS health
consideration, nutritional, phase/guidelines and treatment plans. (27 minutes).
This presentation continues on DVD 2.
General Program No. 2 (1 hour, 32 minutes)
1st presenter: Dr Driscoll (USA) finishes his presentation which
started with DVD 1. Very informative and spoke of the Genetics of PWS.. He spoke
briefly of treatment plans for weight control, genetic counseling and importance
of knowing which form of PWS a patient has, Growth hormone treatment, nutrition
and supplements.. (12 mins)
2nd presenter: Dr Maité Tauber (France), head of Endocrinology in France,
presented ENDOCRINE DYSFUNCTION IN PWS. She touched on many subjects having to
do with Endocrine in PWS. For instance, the "rare disease program" launched in
2004 in France, Nutritional phases, Cortisol treatment, Diabetes in PWS, Growth
Hormone Treatment, and she spoke about the hormone "ghrelin" and how they are
now learning from that hormone in PWS that the "memory of food" is the key! (34
mins)
3rd presenter: Dr Sherman, Bonds University in Australia & President of
PWSA Australia presented a parents perspective about Growth Hormone Treatment.
She spoke of how her daughter was from birth to age 11, before growth hormones,
and then from age 12 to 21 with the growth hormones.. This was a very
educational and emotional .(29mins)
General Program No. 3 (1 hour, 49 minutes)
1st presenter: Dr Dan Driscoll (USA) presents briefly an overview of
the Genetics of PWS
2nd presenter: Dr Maithé Tauber (France) presented on Endocrine
dysfunction in PWS
The presentation was much of the same as she did in disc 2 without the
power point.
3rd presenter: Professor Dick Swaab (Netherlands) who is known for his
brain research, presented on The Study of the brain in PWS.
He touched on imaging techniques of the brain and how they are good but not
great and how the only way to fully study the brain in a patient with PWS is
with post mortem material. He spoke about what the findings thus far are and
the complexity of PWS and how much we know now, but also the fact that there is
still so much more that we MUST learn to save our children.
ROLE OF RESEARCH -- IS THERE A CURE? Presented by Professor Anthony
Holland (UK) (36 minutes)
Describes what are the challenges, how to think about research, focused
intervention, and what’s in the future for PWS research.
General Program No. 4 (1 hour, 30 minutes)
1st presenter: Peter Davies (Australia) presents on nutritional needs
in PWS. This presentation demonstrates the differences in nutritional
needs of those with PWS and those without. (25 minutes)
2nd presenter: Georgnia Loughnan (Australia) presents on effective
exercise to build muscle. (25 minutes)
3rd presenter: Dr. Shuan-Pei Lin (Taiwan) presents on sleep disturbances
with those having PWS. (35 minutes)
General Program No. 5 (1 hour, 47 minutes)
1st presenter: Janice Forster (USA) presented on Food Security and
discusses behavior related to food. (25 minutes)
2nd presenter: Kate Woodcock & Lea Bull (UK) presents on psychological
therapy. Showing the differences in brain functioning with imaging. (40
minutes)
3rd presenter: Tony Holland (UK) and Janice Forster (USA) presented on
psychotropic medications. The discussion was presented as a Q&A with the
audience. (30 minutes)
updated:
02/09/2012
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