Guestbook

(Please note: e-mail addresses and other personal data are available in the original guestbook. For information please contact Hans Straus, president of WHS-Netherlands: hans.straus@12move.nl)

Tusind tak for en vidunderlig weekend. Vi har faaet en masse nye venner og vi har faaet stoerre forstaaelse for WH.
Vi haaber at se alle igen snart.
Kaerligst Jorun Magnussen og Klaus T. Madsen, Denmark

Thank you for inviting me to your meeting. It has been wonderful to meet families and professionals involved with Wolf-Hirschhorn children and to share our experiences.
Dr Nora Shannon, Consultant Clinical Geneticist, Birmingham Women`s Hospital, United Kingdom

Thanks for this opportunity to learn more about WHS, which we have longed for.We will keep in touch in the future. Also this symposium has brought together many Danish WHS families for the first time.
Helle and Henrik Soelund, Denmark

Because of the small amount of welknown WH children in Denmark (10-12pcs), we hope that we Danish people are able to send some questions and/or pictures to the specialist we meet this weekend.
It is our experience that the Danish doctors are only able to tell us about the experience known in the 1974.
Thank you, for telling us about the updated information
Marianne Johansen & Terkel Moeller, Denmark

I am grateful for the opportunity to get know more about problems that affects children with WHS and the way they are solved by professionals and I especially appreciate the possibility to meet the great parents who helps their children to be happy children.
Olgierd Nowicki, Poland

Margo van de Meer, Netherlands
I found it an interesting and nice day.

Marijke van Swaaij, Netherlands
Very inspiring!

Valerie van der Boor; Netherlands
Learned a lot,especially about the medicines against epilepsy, but what loved was to meet Max brothers and sisters...

Stephan Hermsen, Germany
A very interesting meeting, thank you for organizing it and getting all the experts together. For me the main message was, that we should not underestimate the abilities of the WHS-Children. And I was delighted to hear, that they have good life-expectation.
For me as a father of a five year old whs-daughter it would be interesting to learn more about how to teach, educate and train a whs-child. If there will be another whscongress (and I do hope so) I would appreciate the presence of some therapeutics. By the way: Is it possible to get a short abstract of the presentation on Sunday-Morning. I would be glad to get one by E-Mail.
Again: It was an important meeting - and it should not be the only one.

Very important meeting for all the parents. Nice day.
Now we are going to eat.
Thank you.
Greetings from Heerenveen en Grouw (Friesland), Netherlands
And it is not so far as it look likes.

We are very grateful that so many eminent doctors gave their time to come and talk to us parents! Yanthe had a wonderful time, and we have found out so many interesting things about whs. Thank you all very much!
Yanthe, Rogier, Mieke; Belgium

I am very grateful for possibility of participating in this very informative meeting. I found many interesting information for me in my clinical work, possibility of seen of relatively good outcome was also a great stimulus for our families. Thank you also for beautiful atmosphere and common partnership of all. I hope that this was not the last similar workshop, but first in the good future tradition.
Thank you,
Stanislaw ZAJACZEK (Genetics Dept. Pomeranian University of Medicine, Szczecin, Poland)

It was unusual my birthday with personal satisfaction sharing with nice people belonging to international WHS family. Many thanks for Conny for this gift to be together and to understand each other better. To cross different types of barriers is for our future, for future of our next generations.
With best wishes for developing your WHS society, for fruitful ideas to solve different problems children from genetic minority and for their families
Alina T Midro
Dep Clinical Genetics, Medical Academy Bialystok, Poland

Thank you all for having me here at this wonderful experience.
Annet van Betuw, Chromosome Help-Station

Stowarzyszenie Na Rzecz Dzieci z Zaburzeniami Genetycznymi „GEN” z Poznania Polska bardzo serdecznie dziekuje za wspaniale przyjecie grupy polskich rodzicow dzieci z zespolem WHS.
Poznanie tak wspanialych rodzicow holenderskich z innych krajow, oraz ich doswiadczen w opiekowaniu sie i stymulowaniu rozwojowym swoich dzieci z zespolem WHS, jak rowniez mozliwosc wysluchania wykladow wybitnych specjalistow pomoze rodzinom polskich dzieci z WHS.
Mamy nadzieje nawiazania z Holenderska grupa wsparcia wpólpracy dla dobra wszystkich dzieci z rzadkimi chromosowymi zespolami genetycznymi.
BARDZO DZIEKUJEMY
Hanna Maciejewska
The Association for Children with Genetic Disorders „GEN” from Poznan (Poland) wishes to thank for great reception of the Polish group of parents with WHS.
Making acquaintances with parents from the Netherlands and other countries and knowing their experiences to give care and stimulate the development of their children will be of help for Polish families, as will be the lectures of impeccable experts.
We do hope to make contacts with the Dutch parents support group, for the benefit of all children with rare chromosomal disorders.
WE THANK YOU SO MUCH
Hanna Maciejewska, Poland

Bardzo dziekuje za mozliwosc wziecia udzialu w tym spotkaniu. Dzieki niemu dostrzeglem nowe mozliwosci pomocy swojemu dziecku w jego rehabilitacji. Wiele sposrod informacji ktorych dostarczylo mi to spotkanie zamierzam wykorzystac w praktyce. Spotkanie to dostarczylo mi niezapomnianych wrazen I mozliwosci poznania wielu niezwyklych rodzicow. Byla to mozliwosc poznania wielu wspanialych dzieci ktorych jeden usmiech rekompensuje caly wysilek I prace ktore trzeba im poswiecic.
I am very grateful for an opportunity of taking part in this meeting. Thanks to the meeting I got acquainted with new ways that I can help my son in a process of rehabilitation. A lot of things I got from this meeting I am going to put in practice.
The congress provided me with a lot of unforgettable experiences and possibility of meeting many great parents. It was an opportunity of meeting many great children whose smile is a sufficient award for all the efforts and work what they need.
Arkadiusz Bergmann, Poland

I`VE BEEN VERY happy to be here to attend this meeting. It has been a unique and highly enriching experience. Hope I`ll be given again such an opportunity. I`m very grateful for the great hospitality, and have enjoyed so very much the opportunity to have such a close contact with so many nice parents and children. My warmest congratulations to the organizers.
Thanks from the deepest of my heart
Dr. Agatino Battaglia
Stella Maris Scientific Research Institute for Child and Adolescent Neuropsychiatry
Calambrone (Pisa), Italy

Van harte proficiat aan de organisatoren van dit zeer inspirerende weekend! Het was een unieke ervaring om samen te kunnen zijn met de kinderen hun ouders en collega`s! De fijne contacten hebben een diepe indruk gemaakt, waarvoor mijn hartelijke dank!
Dr. Griet Van Buggenhout
Centrum voor Menselijke Erfelijkheid, Leuven, Belgium

It was a wonderful experience to be here surrounded because of our children. I already thought they were special, and now I know it for sure. I loved the shared attention of the people here. It ties docters to parents, Polish people to Danish and to the other nationalities. I love to see how proud we all are on our children, the beautiful pictures and films. The strongest part of our children is the communication and the social contacts: I think we have shown this weekend that we have learned a lot of our children! I thank you for all the work of organising this!
Liesbeth van Hoof (mother of Janneke), Netherlands

Vielen Dank an das gesammte Team, das dieses wundervolle Wochenende organisiert hat. Es war schoen, so viele Familien kennengelernt und soviel interessantes ueber die Probleme unser Kinder erfahren zu haben. Es war eine gelungene Veranstaltung und ich hoffe sehr, noch viele weitere in den naechsten Jahren hier erleben zu duerfen.
Danke fuer alles.
Michael Stark ( Vater von Dominique `96 )
www.wolf-hirschhorn.de
Germany

Vielen lieben Dank fuer die Einladung. Es hat mich sehr gefreut hier sein zu duerfen und es wuerde mich freuen es bald nochmal zu sein. Die Informationen ueber das Wolf Hirschhorn Syndrom waren sehr interessant und gut rueber gebracht. Es war auch sehr einfach neue Kontakte knuepfen zu koennen. Vielen lieben Dank
Mit freundlichen gruessen
Katharina Stark ( Schwester von Dominique `96)
Germany

Thank you so much for arranging this meeting. We have gained new knowledge and had inspiring talks with both scientists and other parents. Just fine.
Best wishes,
Jonathan (whs), Pauline (older sister), Kirsten Pitter (grandmother), Kim Mesterton (father ) and Elin Pitter (mother); Denmark

All of our family finally visited this conference. Last but not least Rosa. Let us keep In mind all children are so different but in the way we communicate with them we can inspire eachother. Thank you so much for the experience and warmth towards WHS and all involved. Best wishes, Anja, Paul and Rosa Rutjes; Netherlands

Produced for WHS-Netherlands by the Chromosome Help-Station: www.chromosomehelpstation.com