Eye Hope Foundation

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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Call for research 2020

Dear all, 


I am very happy that I can announce on behalf of Eye Hope Foundation a new call for research projects on Wolfram Syndrome.
This year has been quite difficult for fundraising but nevertheless we were able to put this through.

We have put a deadline for the 15th of September to collect potential projects.

Don't hesitate to reach out to me in case of questions!

Lode
 

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Summer update 2020

Dear all,

It’s a while since I communicated last and with the summer ahead of us, its time for a short update.

The Victoza - liraglutide study (GLP1 agonist) at Estonia is nearing an end. The rats have received daily treatment for 15 months and were monitored during that time period. This project started after we started Victor on Victoza. The results are encouraging and will be disclosed in scientific papers. The tissues and analyses of this study will continue in the next couple of months at different labs. What we know now tells us that Victoza slows down the degradation due to Wolfram Syndrome. It’s probably the baseline treatment for future Wolfram patients. Thank you, Eye Hope Foundation.  However, it’s not stopping the disease nor reversing it.

That’s why my focus over the past months has been to focus researchers towards gene therapies especially the brain-related aspect of the syndrome. Gene therapies could eventually stop it or even regenerate the brain cells. However, the technologies have a long way ahead to reach the patient. Therefore, it requires full attention now if we wish to have something within 5 years from now. During the April we had a Zoom meeting where groups from France, Estonia, Belgium and the USA gathered to discuss it. My goal is to get together a project where the researchers collaborate and undertake high risk tests, so we get a quick progress.

                                                       Figure 1: Screenshot of the Spring zoom conference focusing on gene therapies

There are basically three different possibilities:

Correct the genetic defects in the cells in vitro (in a dish) and transplant the corrected cells in the patient
Inject a working gene in the cell in vivo (patient) that works in parallel with the defect gene
Correct in vivo the genetic defect in the patient cells e.g. using CRISPR CAS9

On the first possibility there was an interesting paper published by Washington University, showing that diabetes might be cured in mice by transplanting corrected human beta cells.

                                                            Figure 2: Science paper on diabetes cure in mice

Now its key to show that this also can be done for the brain cells primarily. It is my belief that researchers need to collaborate in order to achieve something. I have seen initial seeds of that and will continue insisting on it.

We have limited funding and cannot keep parallel projects alive where similar things are done.

Personally, Victor continues to perform very well at school. His feedback from the teachers is truly amazing and something to be extremely proud of. It is difficult to satisfy his thirst for knowledge. The Corona implications are of course a serious challenge for a weak-sighted person. It is hard to explain to him why such unseen measures were taken for this. Courses happened online on a screen where he almost sees nothing from. Wolfram Syndrome is a much more devastating disease and we could only wish to have a fraction of the budgets. So, your support is needed more than ever!

I attach a picture of last week’s swimming here in Norway where we had the beach for ourselves. Swimming 9 PM in turquoise waters, was no problem.

 

                                                     Figure 3: Victor ready to take his “kveldsbad” (evening bath)

To quote him: “Come on Dad, lets swim. It’s here and now. Tomorrow it might rain.”

We love, admire and take an example to our son!

Enjoy your summer like we will do and feel free to drop me a message if you wish to!

 

Cheers,

Lode

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