Tour classique de Elderschans donated 500€ to Eye Hope Foundation after the first carriage walk of the new season.
Last 30th of April the authentic tradition carriages drawn by horses and ponies and other equidae gave two presentations to the public.
All of this was made possible by the sponsoring of the catering by Hotel de Elderschans and the family Azimi.
Thanks to Bert and Mieke and all of the carriage-friends!
Earlier this week, Marianne Vandekerckhove (Moesjie of Victor), gave some explanation to serviceclub Soroptimisten from Eeklo / Meetjesland.
It was a very fine evening with a interesting and fascinating audience!
On top of the bill we received a beautifull donation of 1000 € to support the scientific research on Wolfram Syndrome.
Thanks to all the Soroptimists who helped to make this possible.
A little while ago we were contacted by the students of 4 Business Education from Sint-Angela institute Tildonk. With their mini-company they want to learn the tricks of the trade and in the meanwhile they want to support our fund aswell.
Of course we are very proud of those young people and are very thankfull of their support in the fight against Wolfram syndrome.
The pictures of their waffle sale can be found here.
At the break of dawn, we saw how our battle against the Wolfram syndrome gains fame. Today's sponsored walk by Victor's class (and school) made the frontpage of the 'Varden'-journal in Norway !!
At this moment, we can say that they've all done very well ... Want to witness their journey? Click here for photos!
We will keep fighting, we will remain hopeful that we can beat the 'rare monster syndrome' one day, as the Norwegians call it!
For Victor and Berhta and all other Wolfram patients.
Today a nice article appeared on RaDiOrg.be (Rare Diseases Organisation) about Victor and Wolfram syndrome.
"No cure, but hope!", that is how we live at the moment. We will keep on going, we will keep on fighting until there is a solution.
Please support our struggle and donate your gift through the King Baudouin Foundation. All gifts of € 40 and more are taxdeductible in Belgium.
“Research brings hope to people living with a rare disease!”
Rare diseases are often chronic, progressive en life threatening.
That is the case with Wolfram syndrome!
Rare diseases are often forgetten, yet they form a large group! In the EU alone there are 30 milion peoples suffering a rare disease (6000 rare diseases), of wich 50% are children.
There is a need of scientific research to offer a better life to the many children and adults suffering a rare disease.
To day there is no cure for Wolfram Syndrome!
Our fund, the Eye Hope Foundation, was able to start up scientific research at ULBrussel and KULeuven. It takes money to do so, a lot of money. Please support our fund, our battle. Help uw beat Wolfram syndrome. Make your monthly donation now! Your gift gives us hope, hope for Bertha and Victor!!
Please support our goal to fill theater 'De Roma' in Antwerp to the rafters ... that way we will be able to boost the scientific research on Wolfram Syndrome. For Bertha and Victor!
Order your tickets now for Bang! in Antwerp on monday 13th of februari 2017.
It will be a gorgeous show ... what did you expect?!?!
We want to fill the hall to its maximum, on monday the 13th of February ... for Bertha en Victor!
Monday the 13th of February 2016 in 'De Roma' in Antwerp!
Order your tickets here!
Many thanks tot "Verstraete IML" for the support in our battle against Wolfram Syndrome.
Click here for tickets for Bang! in Roma Antwerpen
Click here to order your greeting cards
In 2017 we are looking forward to the results of the Wolfram-trials by Prof. Urano with the Univesity of Washington and by Prof. Barrett with the university of Birmingham.
Of course we will continue gathering the much needed financial support for their scientific research.
We have already planned some activities:
- On the 15th of January 2017: sold-out Bang!-event in the KBC Tower in Ghent - many thanks to Ivan De Vadder, Jan De Smet and Karl Meersman
- On the 13th of February 2017: extra Bang!-event in De Roma in Antwerp - many thanks to Ivan De Vadder, Jan De Smet and Karl Meersman
- On the 28th of april 2017: retorica-ball in 'de oude vismijn' in Ghent - many thanks to Sint Bavo of Ghent - more details to follow
- On the 20th and 21st of May 2017: Damme Golf CharityCup in Damme - many thanks to Rotaryclub Damme - more details to follow
- On the 1st of October 2017: Maldegem ment for charity - more details to follow
As you can see the preparations have been made for a successful year! You can support us by attending at one of our events or by donating, your gift does matter in our battle against Wolfram Syndrome!
We wish you all a lot of fun and happiness in 2017.
