reunions

Jesper, Michiel and Hayley 2007 
Since 1998, we have been able to organize reunions for all progeria families in Europe:

1998 Oosterhout, Netherlands
2002 Bad Münstereifel, Germany
2003 Magdeburg, Germany
2004 Cologne, Germany
2005 Izmir, Turkey
2007 Kaatsheuvel, Netherlands
2008 Rullingen, Belgium
2009 Stuttgart, Germany
2010 Ashford, UK
2011 Ashford, UK
2012
Montegrotto Terme, 
2013 Ashford, UK
2014 Skørping, Denmark

2015 Uden, Netherlands
2016 Aalst, Belgium

In 2013 parents and children attended a meeting in Marseille with medical specialists and researchers at INSERM.

In 2014 our families were invited to Istanbul by ÖZEV, the Turkish Education and Solidarity Foundation for Disabled Persons.

In January 2015, parents attended the presentation of a new therapy for children with Progeria in Marseille. It was the first French-Italian meeting on laminopathies and other nuclear envelope-related diseases.

Magical Events

In 1997, the first television program on the topic of Progeria was broadcasted in Europe, with an appeal to the viewers for a gift. This TV program led to considerable response from people in Germany, Austria and Switzerland. It enabled us to realise our dream: in October 1998 the first Progeria Family meeting in Europe took place.

Thanks to the support of many volunteers and sponsors, fifteen Progeria families from all over Europe could meet each other in the Netherlands among the fairies, magicians and knights of the Efteling theme park. The fare-well party was celebrated in an old castle, where parents and children danced abundantly and enjoyed a fairy tale buffet. The previous days the children had practised: they performed in a spectacular theatre show for all parents and guests.

 

sweet little Elf
At reunions, the parents also receive information. Doctors, therapists and researchers give specific information and answer questions. Parents exchange experiences, they can share emotional and practical aspects connected to their difficult task.

Our guests in the past years came from the Netherlands, England, Germany, Italy, Switzerland, Austria, France, Denmark, Sweden, Poland, Algeria, Russia, Yugoslavia, Portugal and Turkey. 
The reunions have proved to be extremely important in the life of progeria children. 

The annual reunion is always a joyful, but also an emotional event. At the end of a week there are also tears, because nobody knows if we will be able to meet again next year..

Although we lost several children during these years, the number of participating families has grown. 

Megane preparing for theatre 1998
farewell hugs 2010


Thanks to Sammy Basso and the Italian Association for Progeria, we all met in Italy in 2012. You are our hero, Sammy!


images: © Benno Neeleman 


Thanks to Jesper Sørensen, TV2/Nord and many Danish supporters, we have been offered an amazing week in Denmark!
Image: © Benny Rytter