Eye Hope Foundation

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!



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!





Autumn 2019 update

Dear Wolfram society,

It’s the time of the year again for a short update on our activities during the past 6 months. Thanks to your continued support we have continued to fund a couple of very interesting projects in Belgium, the USA and Estonia. Without your contributions to our fundraising this wouldn’t be possible.

During the past months, an initiative has been initiated in the US to create a Wolfram Syndrome Research Alliance bringing together researchers, patients and medical doctors. As part of this work, an overview was created of currently ongoing research and treatments in Wolfram Syndrome with the different phases.

Figure 1: Wolfram Syndrome Research and Treatment Pipeline, made by Sarah Gladstone.

Many of the projects in the overview, have been initiated or supported by our Foundation.

Since the announcement that Victor is currently taking Victoza (also called Liraglutide or GLP1 agonist), I have been contacted by numerous parents of WFS1 kids. Several dozens of kids are now on Victoza. According to my knowledge, the results are uniformly positive resulting in an increased quality of life at least. Especially the diabetes part becomes manageable. In order to gather the knowledge and experience at these different individuals, I created a Facebook group called “GLP1 for WFS1 kids” (https://www.facebook.com/groups/517126908859489/). Before starting however, its recommended to visit your endocrinologist.

Despite the positive results we observe, there is little known on the neuroprotective effect (eyes, hearing and brain) of liraglutide on the longer term. Therefore, we initiated since the beginning of this year a project in Estonia (Tartu) to investigate the long-term effects of liraglutide on WFS1-deficient rats. This project is running for almost 2 years according to the lifetime of the rat. During the past week, Victor and me visited the research director Dr. Mario Plaas and his co-workers Dr. Anton Terasmaa and Kadri Seppa in Tartu. The project investigates the effects of liraglutide on most phenotypes (diabetes, eyes, ears and brain) and is unique in its kind. Currently it's sponsored monthly by Eye Hope Foundation and we are always looking for funding in order to continue this project. I believe it's key to our society and the results will be presented at conferences of neuroscience.

Liraglutide is in best case slowing down the degeneration which is still our main priority. We discussed also several ideas to go to the next step which is recovery of functions. It's my ultimate hope we can initiate projects on this as well in a near future!

Figure 2: Victor entering the cleanroom in Tartu with A. Terasmaa

Figure 3: Inspection of WFS1 and Wild-type rat by Victor

Figure 4: Visionary drawing as an inspiration to the team, made by Victor.

Figure 5: Final dinner in Tartu, Estonia, with research team.

As a last point, during March next year, the French Wolfram association will organise its bi-annual Wolfram syndrome workshop in Paris where researchers have a chance to interact. The research that is sponsored by Eye Hope Foundation will again be strongly represented and provide major highlights to the conference!

To conclude, things on Wolfram research are moving, still too slow for me, but at least faster than ever before. Time is our worst enemy!

Thanks for reading and take care,


Eye Hope Foundation – Autumn 2019 update