Eye Hope Foundation

Spring update 2021

Dear Friends,

It’s almost half a year since our last update. We hope that you all are in good health and doing well.

In the meantime, we have read and analysed the R&D projects that we received after our call for projects and selected to continue with two of them.

One project solely funded by Eye Hope Foundation is continuing the work by M. Plaas in Estonia on the WFS1 rat. In my opinion this is still the best animal model available to date of Wolfram Syndrome. The project will evaluate neutrophic factors, look at GLP1 / GIP co-agonists and gene therapy as a treatment for Wolfram syndrome. With their established baseline from the previous projects, they have a good comparison base.

Another project was picked in cooperation with the Snow Foundation where we will fund part of the work by B. Delprat and his team in Montpellier. The project also uses gene therapy for administering a protein in a mouse model of WFS1. In parallel the group looks also at a zebrafish model of WFS1.

We wish that we could fund many more projects but after a corona year we are happy we can contribute at least a bit of funding to these two groups.

Besides trying to find a better treatment and managing our daily lives, we as parents have a duty to prepare our kids for the future. Victor is a very positive boy and attending sixth grade in the local international school. As a preparation for the transition to the Middle Years Program, he completed his exhibition project. As a topic of choice, he focused on different types of syndromes (“No surprise”). As part of his work, he performed a 24 km sponsored walk for Eye Hope Foundation collecting a significant amount of funding. He got excellent grades and below are screenshots of his first and last page.

We are very proud of his attitude in life.

On behalf of Eye Hope Foundation,

Lode Carnel

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The 28th of februari

The 28th of februari ... 

Worldwide it is "rare diseases day"...

A day to write you a letter.

A day to thank you for all the support you gave us. 

We told you the story of Victor, of Bertha, of Pim and a lot of others. They have Wolfram Syndrome. Most doctors have never heard about Wolfram, an ultrarare disease. It determines the rest of their lives and the lives of their families. 

There is no cure (yet), the future is unpredictable, people with similar conditions don't live next door, a treatement does not exist (yet) …….

We started Eye Hope Foundation to get some hope and to give some hope. 

To contact researchers aroud the world, to financially support them by setting up some research to find a treatement or a cure.

We have already reached a lot, but unfortunately the end is not yet in sight. 

2020 was a cruel year!

We lost our loved ones in their battle against covid. We couldn't meet each other, we couldn't hug each other. 

Eyeopener, Golf charity cup, the barbecue of V-Care, Maldegem ment for Eye Hope, all those events that couldn't happen! We missed a lot of fundings...

And still you were there with your phonecall, your message, ...

And still you kept on supporting us by donating  to our fund. 

Thanks to you all, we keep on having faith, we keep on supporting the scientific researchers.

Thanks to you all, Eye Hope Foundation is still the leading force behind the research done worldwide on Wolfram Syndrome. 

We hope you are all doing very well!                                                                                                                      

Kind regards, 

www.eyehopefoundation.org

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Autumn update 2020

Dear Friends,

 

Hopefully you are doing fine and taking care of your closest during this health crisis.

As foundation founders, it’s easy to be frustrated over many things. We collect far too little money, we can fund only a limited number of projects, the foundation work comes on top of all daily issues with our children, researchers are years away from a solution etc. etc.

However, we have the duty to our children and families to look at it from another angle.  There are plenty of positives as well, but only if you actively pursue them.

During the past half year, we launched our call for research projects and received more than ten well described proposals.  Several of them made a lot of sense and we wish that we could fund all of them.

In the selection of the projects we focused on three things:

Realism
Timeframe towards patients
Experience in the field
Animal model

After careful consideration, we selected the project of Dr. M. Plaas, Estonia to be funded. The project will run for two years and focus on novel treatments based on gene therapy and novel molecules. We had an excellent collaboration during the past couple of years and we are looking forward to continuing that. Their rats are in our opinion the most reliable animal model available within the wolfram research environment. If co-funding by other patient groups allows, we might evaluate to co-fund other projects as well over the next couple of months.

Therefore, we reach out to other foundations to approach us. Together, we are stronger!

To summarise, we are proud of several things.

Proud of the Eye Hope Foundation for allowing us to search for research projects. Since our start we have been the driving force for Wolfram Syndrome research around the world.

Proud of the three Eye Hope families and many Eye Hope supporters for collecting funding for our organisation. They are unique within the Wolfram field!

Proud of the progress in research during the last years and the perseverance of our researchers.

On a personal note, I am proud of the positivism of my son, his sisters and my wife! They help me through our daily issues and that’s only possible with their positive attitude!

Eye hope we will find good treatment alternatives.

Take care and stay safe,

On behalf of Eye Hope Foundation,

Lode Carnel

 

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