Happy Holidays!

special... with good reason

In this documentary three members of the progeria family circle 'dreamteam' explain why they help to bring the progeria children and their families together.

Progeria Reunion and Scientific Workshop

In september 2012 scientific researchers from all over the world met in Italy to share the results of their search for a treatment for progeria children. This congress was organised by Giovanna Lantanzi and Stefano Squarzoni form the University of Bologna, and made possible through donations of the Italian organisation for children with progeria: A.I. Pro Sammy Basso.
At the same time and place, all European progeria families gathered for our annual progeria reunion.

While the children enjoyed a party with clowns and jugglers, parents were informed about different plans for new steps towards a trial. Due to the efforts of high qualified researchers, parents of progeria children are now in the position that they can choose between different options for a treatment. To help them make this difficult decision, doctors explained their approach and illustrated on what grounds they expect the proposed therapy to be benificial.

options for therapy

Reducing the toxicity of progerin is possible with an FTI (Lonafarnib, and/or Vasten). The Progeria Research Foundation plans to continue the use of FTI's, perhaps in combination with an immunosuppressant drug (used to prevent rejection after organ transplantation) in the next trial. In vivo testing on mice will hopefully show that Rapamycin can improve the effectiveness of the FTI’s.

Another approach is the antisense therapy, with a morpholino. Annachiara De Sandre presented findings in research done by Carlos Lopez-Otin and her research team in Marseille. Tests on mice showed promising results, since this medication can not only reduce the toxicity, but also lower the quantity of progerin.  

The Big Run: 10 Marathons in 10 days

Charlotte Okines and Becky Reid are planning a sponsor run for the Progeria Family Circle. The route goes from Yorkshire to Kent. They will run 10 marathons in 10 days! Starting on April 5th, they hope to finish their 438 km long run on 14th of April 2012.

Charlotte always had a tough time dealing with her sisters condition, progeria. For a long time, she tried to block out what was happening. It was very difficult for her to feel so helpless. But in 2010 she helped to organise and host the UK’s first Progeria reunion, which was repeated again in 2011. This was a life-changing experience for her.

 ‘I couldn’t believe the strength, love and support between all the families, it was incredible. It made me feel strong and safe. I decided that I wanted to start raising money to make sure the reunions continue to happen as they have such a positive impact on everyone involved’. 

Charlotte and her friend Becky will start in Yorkshire, because Harry – another Progeria sufferer and close friend of Charlotte’s sister Hayley – lives there. They will then aim for Kent to meet Hayley. For more information, or to support this sponsorrun, please click HERE..

You can follow Charlotte and Becky's sponsor run on FACEBOOK

theatre benefit show

In the past decade a bond has grown between dance school MGDance and the Progeria Family Circle. On European reunions Marianne de Pagter has been present. She always knows to put a fabulous show together with the progeria children and their siblings. For all parents it is a moving experience to see their children in a starring role on stage.

To make a new reunion possible, Marianne de Pagter now organises a spectacular theatre show with dancers and musicians from her dance school.

date: 10 sept 2011
location: theatre Junushoff, Wageningen, the Netherlands

Pre-ordered entrance cards cost €10,- and can be purchased at ronmgdance@live.nl.
All profits will go the the Progeria Family Circle.

image ©: Benno Neeleman