Eye Hope Foundation

'Expo Eyeopener' For Eye Hope Foundation on tv in Belgium

With her brother, Bertha thought of a plan to draw faces and then selling them for Eye Hope Foundation. With the gathered funds they wanted to help the scientific research on Wolfram Syndrome. 

EyeOpener is the result of their idea.

What if ... we invited a lot of children to make drawings, so we can make an exposition of those drawings? 

EyeOpener, is an exposition of artwork by famous artists and of drawings by children between 6 en 14 years old.

The theme of this exposition is "Distorted faces”, because Bertha sees things differently...

 

On Thursday the 21st of december 2017 this call will be on TV in Belgium, on the program "Iedereen Beroemd".

For praktical info : CLICK HERE

To watch the reportage on "Iedereen Beroemd" CLICK HERE: 

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'Expo Eyeopener' For Eye Hope Foundation on tv in Belgium

With her brother, Bertha thought of a plan to draw faces and then selling them for Eye Hope Foundation. With the gathered funds they wanted to help the scientific research on Wolfram Syndrome. 

EyeOpener is the result of their idea.

What if ... we invited a lot of children to make drawings, so we can make an exposition of those drawings? 

EyeOpener, is an exposition of artwork by famous artists and of drawings by children between 6 en 14 years old.

The theme of this exposition is "Distorted faces”, because Bertha sees things differently...

 

On Thursday the 21st of december 2017 this call will be on TV in Belgium, on the program "Iedereen Beroemd".

For praktical info : CLICK HERE

To watch the reportage on "Iedereen Beroemd" CLICK HERE: 

Read more...

Choose Eye Hope Foundation during 'The Warmest week' by Stu Bru


Our Eye Hope Foundation has been selected as one of the good causes for 'The Warmest week'. That is a charityevent organised bij Studio Brussel, Belgium en it takes place at the end of december every year. 

Organise an activity yourself in 'the warmest week', choose our Eye Hope Foundation and help us fight against Wolfram Syndrome. 

If you can not put up an activity, please join one of the activities below en support their dedication to our foundation. 

Let us supporty the scientific research in Wolfram Syndrome together. Lets insure that this will be the very warmest week ever!! 

1) Flemisch gouvernment - MOW - deparment Geotechnics is having a soupaction. 
Every day fresh soup is served! Be quick, because for now every day the soup was sold out at 11 am. You can have the soup is a cool personalised cup. The soup-event ends with a stew-afternoon sponsored by some colleague's.

       

2) Sylvie-Anne Ombregt is making en selling stylish candleholders 'A cup for life'. 

3) The village of Adegem shows it's warmest hart during 'AOIGEMS VIER' on the 23rd  and the 24th of december. 
start : 09:00 - end : ??
Aoigems breakfast / lunch : warm ham/ cake and coffee
Concerts by : Verenigde Vrienden Adegem / Canticorum / Tim& Thomas
Amani Bukavu : as a carpenter Luc Savat takes his kownledge and materials to a school in Bukavu.

   

 

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Looking back on the beautiful event in Maldegem

On October 1st 2017 there were no efforts spared to organise the impressive horse-event in the Sint-Annapark in Maldegem and to raise money for the Eye Hope Foundation and for the scientific research on Wolfram syndrome.

One's heart stands still as mischief happens to a child. Everyone wants to see their children and grandchildren grow up healthy and happy. Children do not avoid disaster, not even those who are born clean, well and promising, not even those who haven't lived fully yet. Parents are powerless and the child does not understand what is happening. All people involved, the environment, the grandparents, the friends and family are overwhelmed by endless sorrow, which only gently fades over the years.

The 'Moesjie' and 'opa' of Victor have organised a grand and free horse-event in Maldegem at the Sint-Annapark in order to support scientific research. The city of Maldegem, the Menning-Association of Bruges, the BDA, the Schipdonkdrivers, many businessmen of Maldegem-Center, the serviceclub Soroptimists and some colleagues doctors of the family have been enthusiastic and helpfull to make it a unforgettable event. Numerous companies from the region helped by financial of material sponsorship to this big event.

The skillrace-course and the equestrian events that the antique carriages had to fullfill in the park were a unique experience for the supporters. 
The show of the mini-horses was an attraction and to see a horse whisperer in action was a sweet and moving rarity. The ponyrides, the cours by cones and the demonstration of the horsmen were magnificent. The whole was graced with hunting horn blowers, an aperitif concert of the Royal Fanfare from Adegem and supported by backgroundmusic chosen by DJ Hannes.

The sponsorship for charity has moved many people of Maldegem. It was a fantastic and unique happening, that was admired and tasted by everyone, with in the back of their minds the picture of a glossy, handsome, healthy and defenseless child.

Compassion graces a human being. The carriers of people are those who are the basement for each others and who help carry the weight of their sorrows, those who reach out with open hands to what transcends them and fold the hands (Thomas celebration). Maldegem gave the best of itselve.

The beautiful amount of €31,000 was gathered to bring the scientists a step closer to a solution for Wolfram syndrome 

To those who still want to support this cause: www.eyehopefoundation.org.

Photo Els Stevens. Text Marianne Posman.

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First birthday of Eye Hope Foundation

Eye Hope Foundation has celebrated its first anniversary this summer. Time to reflect back on our achievements in the past year.

As you have seen on our website, we have had many events in the past year en we will have many more in de months and years to come! Both the number of events as the amount of money they all raised are above the expectations we had in mind at the start of this initiative. So we would like to thank every single person who organised, helped or participated in one way or an other at these events. The funds that were collected have been fully spend on research toward Wolfram Syndrome. 

Our Wolfram-journey really started by attending the Wolfram conference that was organized by the French Wolfram Association in Vannes in June 2016. There, the most prominent Wolfram researchers gave a status on their work. Most promising from the conference was the announcement of two clinical trials. One on Dantrolene that is currently ongoing at Washington University and the other on Sodium Valproate, soon to be started at Birmingham hospital. Both clinical trials are testing the use of already existing medicines with the aim to slow down the progress of the disease. Because those medicines have allready been approved for human consumption, the time course from bench to patient is severely reduced as to when a new molecule is to be developed.

With the understanding from the conference and published literature in the fields, we have used our funds completely towards initiating research projects in Belgium as well as abroad. A short summary is given below: 

  • In Leuven, the team of Prof. L. Moons has obtained mice that were infected with Wolfram Syndrome from an Estonian group. The mice have gone through several screenings and were then cultured to produce an offspring. This is a necessary step to obtain a statistical relevant group of mice with mutations in both alleles. Possible treatements are tested on mice with and without Wolfram syndrome so the scientists can compare those mice to mice that did not receive the treatment.

Figure 1: the team at the KU Leuven (Jessie Van Houcke, Lies De Groef and Lieve Moons)

Figure 2: On the left a cage with normal «wild-type» mice and on the right a cage with WFS1-type mice

  • In Brussels, a team led by Prof. M. Esteve, started testing the compound GLP-1 agonist on cell level. They compared normal cells and cells with reduced Wolframin production (like in people suffering from Wolfram Syndrome) and treated those with several GLP1 agonist. Initial results are promising. Furthermore, the team has been collaborating with other research groups to obtain stem cells from Wolfram patients.

Figure 3: M. Esteve at the ULB

Furthermore, both teams at the KUL and the ULB have done common testing where GLP1 pumps have been implanted in the Wolfram mice. Initial results are expected after summer.

Eye Hope Foundation is proud to have initiated research on Wolfram Syndrome in Belgium and we will continue to support those researchers.

Figure 4: Recognition of Eye Hope Foundation by the Koning Boudewijn Stichting

  • Finally, the foundation has been a driving force behind a common call for projects, where three leading Wolfram patient organizations (the Snow Foundation, the Association syndrome de Wolfram and Eye Hope Foundation) have committed into the funding of one project over the next two years. Six projects were obtained among which a top research project of a Belgian group. After carefull review, the group of Birmingham (Prof. T. Barrett) has been selected to find reliable biomarkers for potential drugs against Wolfram.

We look back at this first year with a happy feeling. The progress and results are hopefull. We are collaborating with all Wolfram researchers and have attracted attention of other research groups towards this field. We have laid the fundaments in Belgium to foster research towards a cure. We possess today a cell model as well as an animal model of the syndrome. First trials on those with potential treatments are furthermore promising.

Other projects run in parallel elsewhere in the world, and we will continuously evaluate them for potential funding in the years to come.

Despite this good start and our happy feeling after this first year, we realise that our work has only just begun. A treatment looks possible within some years but is still far from a cure, at its best it will slow down the progression of the disease.

We are living on hope but we need more funding, a lot of funding to find a cure for Wolfram Syndrome! We will keep on fighting, but we will also need your help doing so into the future!

Thanks again to all of you (sponsors, organizers, researchers, volunteers and event participants) who are supporting us during our life-long project for Victor, Bertha and all other Wolfram patients!

September 2017

Lode Carnel

 

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The ladies of Sint-Bavo support our battle against Wolfram Syndrome

Although the schoolgates have been closed and holidays have allready started for over a week, we received some good news from Lauren Amez. The retorica-ball of St. Bavo humanities in Ghent was a great success.

 

These young ladies have made a nice win with their annual ball, so they can support 6 charities in the fight that each of them carries. Among the 6 charities, the Eye Hope Foundation was chosen by the members of the ballcommittee.

Of course we are honored to be chosen as one of the 6 charities.

We are also very pleased to see that the 'youth of today' has the heart in the right place and that they can give hope to so many people with the returns of their ball.

Thank you very much to every one involved in organising this beautifull event!

 

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The Norwegian Jumble sale was a great success!

The Jumble Sale organised by Victor's class was a big success.

They collected 15 683 kroner (1650€)! Thanks to everybody who helped and special thanks to Jacqueline Schulze. Thank you Jackie for showing Victor that everything is possible with hard work and dedication. The sky is the limit! Thank you for standing by his side throughout the whole year! You will be in our hearts forever.

Thanks Kate, Ellen, Nicole , Ingvild and Nina for all the help.

More pictures 

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