Eye Hope Foundation

Eye Hope Foundation– Spring 2019 update

Dear Friends, Dear Wolfram Syndrome Community,


In this newsletter, I wanted to give an overview of the research initiatives we took with our foundation during the last six months.

These initiatives are always discussed and evaluated internally. During the last months, I received significant assistance by Dr. Ir. Yvan Gilliams, a retired engineer that is devoting a large part of his pension to understanding the mechanisms underlying Wolfram Syndrome and supporting Eye Hope Foundation.


During January 2019, we decided to donate money to a project in the labs of Prof. G. Bultynck (GBIOMED - KU Leuven) at the KU Leuven. The project will investigate the role of Ca2+ signalling in cell models of Wolfram Syndrome. It will allow us to conclude the underlying mechanism and hence allow us to focus on those molecules that primarily target that pathway. The project will be executed by an experienced Ph.D. student and will also receive European funding.


The lab in Brussels is continuing their research with GLP1 agonist on a cell and a mouse model of Wolfram syndrome. Their work was the basis to put my son last October on Victoza (a commercial GLP1 agonist). Their results as well as the results on Victor were presented last week at a conference in the UK. Marianas work won a presentation award (Figure 1). Victor his diabetes is currently managed by Victoza only, allowing us to remove the insulin pump. For effects of GLP1 on the neurodegeneration its too early to conclude anything both on animal and on “Victor’s” level.

Figure 1: Mariana Esteve presenting the work on Wolfram Syndrome at the Islet Study Group and Beta Cell Workshop
Therefore, we have started a project in Estonia in the beginning of the year. The group led by Dr. M. Plaas (www.etis.ee/CV/Mario_Plaas/eng?lang=ENG&tabId=CV_ENG) and Dr. A. Terasmaa (https://www.etis.ee/CV/Anton_Terasmaa/est?lang=ENG&tabId=CV_ENG) will investigate the effects of GLP1 agonist on a rat model of Wolfram Syndrome. This project will cover almost 2 years and allow us to make conclusion on the neuroprotective effects of GLP1 agonist. The animals were born in January and started the administration of GLP1 agonist during last month. Both researchers have a long experience within the Wolfram field and were driving forces behind the various animal models.


Figure 2: Anton Terasmaa with the WFS1 rats that are receiving GLP1 agonist


The projects that we are sponsoring are closely followed by the Wolfram community. The groups we are sponsoring are visited by other foundations that are evaluating to sponsor them as well. I am also pleased to have received a meaningful donation from another Wolfram foundation to fund our Estonian project. The more such collaborative funding we receive the more useful our research will be!

Furthermore, it a great pleasure to note that several WFS1 patients other than Victor have starting to take GLP1 agonist to slow down progression of Wolfram Syndrome. Patients from Iran, Italy, Germany, Spain and USA have been contacting me to know our experiences. In my humble opinion it’s the most promising available drug currently on the market to combat Wolfram Syndrome. The projects that we are doing now will allow us to conclude on the degree of protection it offers against the various symptoms.

Thanks to all the supporters and volunteers helping our foundation grow towards a meaningful organisation. The results thus far prove that a small foundation like Eye Hope can make a difference when the scarce resources are used wisely! And on the latter, you can be sure that I will guard over it!


With best regards,

Lode Carnel

Eye Hope Foundation – Spring 2019 update