Eye Hope Foundation

Update on the research on Wolfram Syndrome

With Wolfram symposium of Paris just behind us and 2018 almost halfway through, I thought is was time to give you an update on the supported projects and their evolution.

Every 2 years we have this great Wolfram-conference in Paris. Wolfram researchers from all over the world come here to present the results they achieved and the goals they have set for the years to come. In 2016 it was my first time to attend at this symposium. Now, 2 years later, I am very happy to see that the Eye Hope Foundation has made a difference in the research on Wolfram Syndrome and has been able to accelerate the research and to give the financial support to the scientists who are trying to find a cure . 

The scientists we have funded (Dr. M. Esteve, Dr. J. Van Houcke, Prof. C. Verfaillie, Prof. F. Urano, Prof. T. Barrett and Dr. C. Delettre) all presented their results at the workshop that was located in the proximity of the famous Eiffeltower

The research has clearly advanced. The progress is visible on the three aspects:

  1. First of all they try to delay the progression of Wolfram Syndrome by using existing approved drugs.Three different medicines showed promising results on human patients with Wolfram Syndrome although none is conclusive at this point of time. More research is needed to conclude which currently tested medicine is the most effective for human patients. 

  2. Second strategy is stopping the progression of Wolfram Syndrome through gene-therapies or new mini-molecules. This strategy has a longer timeframe. Initial results on cell level and animal models were shown but are still preliminary and more research is needed. 

  3. Third and last point to handle is to find a cure for the damage through regenerative medicine. On this third step Prof. C. Verfaillie showed us a very promising presentation on CRISPR-CAS9. This is a technology to correct gene defects, dealing with the actual core of the problem. 

As you can see, despite the promising results and the clear progress in past 2 years, a lot of work still has to be done. Therefore funding is mandatory.

Our foundation has shown its ability to achieve success during the past years. But there is more, I am happy to announce that the Eye Hope Foundation will be funding three new projects during Summer 2018.

The first project is a follow-up project at the ULB where a side-by-side comparison of different medicines and combinations thereof will be done on cell-and WFS1 mice-models.

The second project will support the research at Washington University on MANF as a regenerative medicine for e.g. visual impairment.

Last but not least, the Eye Hope Foundation has decided to fund the lab of Prof. C. Verfaillie at the KULeuven to provide a gene correction of the WFS1 mutation using CRISPR-CAS9 technology.

All these projects will be described in more detail at a later stage.

I am also thankful to have met these excellent researchers from around the world as well as the other patient-organizations, giving us hope and motivation to carry on our efforts.

I am optimistic we will find a treatment against Wolfram Syndrome.

The only question is when will it happen? And will our kids still be able to take advantage of it?

Thanks for reading and for your contributions,

On behalf of Eye Hope Foundation,

Lode Carnel.

 

 

 

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Damme Golf Charity cup

 

Last weekend we could again enjoy the Damme golf charity cup.

Again the revenues of this party were partly donated to the Eye Hope Foundation. 17,000 euros was collected to support the research into a cure for Wolfram's syndrome !! Thanks to the organization, the sponsors and the participants who made this possible!

     

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Please support Victor's teacher, Alexander Cadden, in his challenge this weekend!

Victor's teacher, Alexander Cadden, was inspired by the incredible positivity that Victor shows in his classes.

Besides the wonderful thirst for knowledge and an eagerness to learn about and engage with the world around him, Victor has tought his teacher that nothing is impossible.  As someone tells Victor that something isn't possible, his answer is always the same; 'Why not?' For Victor, the only failure would be to not have tried in the first place. 

So Victor became his inspiration in taking on this challenge. 

In Grenland, Norway, there is a challenge called the Ten-Tops-run. The aim in this challenge is to climb 10 out of a possible 17 hills between May 1st and November 1st.

This year mister Alexander will be climbing all 17 tops and to add a bit more of a challenge, he will aim to do this in one single weekend!

(9th– 10th June).

He will walk over 90km in ascents and descents together with his friend, Simon.

The first goal with this challenge is to inspire Victor, the boy who inspires him.

The second is that he wants to raise some money for the Eye Hope Foundation and to give some hope to the parents and children who are battling this cruel disease. 

YES you too can support Mr. Alexander! No amount is too small for such an extraordinary attempt! Donate now!

You can read all all about this challenge here.

Many thanks to Alexander Cadden for being a great teacher for Victor, and to support him in his daily struggle with Wolfram's disease. 

We wish him the best of luck in his challenge this weekend. 

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Aoigems Vier warms our hope

The 'warmest activity' of Aoigems vier raised 17.000 euro in total of wich 8500 euro was donated to our Eye Hope foundation.

With this gift not only the 'warmest week' got warmer, our hope was given a boost too! 


We will keep on fighting ... for hope ... for a disease inhibitor ... for a cure for all children suffering from Wolfram Syndrome. 

Thank you Aoigems Vier!

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Wonderfull day and great result on the Skimathon by Snowplus

By organising the Skimathon, Snowplus had the intention to give Bertha an unforgettable day. Besides this first goal they wanted to raise money for our Eye Hope Foundation.

The first target was reached on saturday. Bertha was shining and had the day of her life. For 1 day she forgot all about her worries. Her parents Stephan and Sophie saw how much their daughter enjoyed the day! 

After some calculations, Snowplus had to conclude that their second intention was a great succes! The skimathon raised no less than 23.854,78 EURO for Eye Hope Foundation. 

We would like to thank everyone with Snowplus to support our battle against Wolfram Syndrome so much!

Photo by Frankie and Fish

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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: 

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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: 

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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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