Phone: 800-926-4797 or 941-312-0400
Your membership provides this website - Join Today!

 

HOME

BE INFORMED
  
> About PWS
  
> Get Publications
 
 > About PWSA (USA)
        
Board of Directors
        
Adults with PWS Advisory
       
 Office Staff

MEDICAL
   > Health Concerns
 
 > Medical Alert
  
> Psychiatric
  
> Diet Resources
  
> Growth Hormone

RESEARCH
   >
Research Grants
   >
Funded Research

   > Participants Wanted
   > Research Topics
   > Scientific Advisory Board
   > Clinical Advisory Board

GET INVOLVED
 
  > Spread Awareness
  
> Become member
   >
Registry

SUPPORT
  
 > Newly Diagnosis
   >
Non-Medical

 
 > For Families
  
> For Providers
           
Advisory Board
   >
For Educators

   > State Chapters
   > Links and Resources

MEDIA

GIVE

CONTACT US

 

7th International Prader-Willi Syndrome Conference - DVD

Have you ever wished you could go to a conference, but don't have the money or resources to go?  Well here is a series of DVDs that captures the speakers at the International Conference in Taipei, Taiwan that took place May 20-23, 2010.

Some of the proceeds will go to the International Prader-Willi Syndrome Organization (IPWSO) for their participation in making this series of DVDs available to everyone.

All 5 DVDs in one package at $40 for members and $50 for non-members. To order, please call 800-926-4797 or email cbeles@pwsausa.org with your request.  Click here for our order form.

Program Information scroll down.

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
 

Return to Home page

PWSA(USA) Disclaimer 

Membership
Payments

PWSA (USA)
Privacy Policy

PWSA (USA) Link Policy

Email PWSA(USA)

 Email Webmaster