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OUR SCIENTIFIC ADVISORY BOARD

The members of the Scientific Advisory Board (WAR) evaluate the research proposals submitted to Stichting Ushersyndroom or received through Uitzicht. They assess the quality, relevance, and feasibility of the proposals. Applications are evaluated based on the four themes that aim to lead to our Moonshot: “By 2030, the Netherlands will be familiar with Usher syndrome, and diagnosis, treatment and care will have become standard.”

Based on the assessments from the WAR, a grant application is either approved or rejected by the board of the Usher Syndrome Foundation. The board may decide to award a portion of the requested grant or the entire required amount.

Research can only commence once complete funding has been secured.

The progress of ongoing research

During the duration of the research, the Scientific Advisory Board closely monitors the progress. For all studies, the Usher Syndrome Foundation receives a final report and presentation. If the duration exceeds one year, the Usher Syndrome Foundation also receives a mid-term review meeting (midway assessment). If there is insufficient progress, the Usher Syndrome Foundation may halt funding mid-project.

RESEARCH AGENDA

Scientific research is crucial to enable and improve diagnosis, treatment, and care. The foundation serves as a meeting point and knowledge platform for patients and their families, caregivers, and researchers. As a result, we are a key player in promoting scientific research.

Stichting Ushersyndroom aims to invest specifically in areas where scientific breakthroughs can be achieved and that have a significant impact on people with Usher syndrome and their loved ones. We believe these investments offer the greatest chance of achieving our goal:

“By 2030, Usher syndrome will be well-known in the Netherlands, and diagnosis, treatment and care will have become standard.”

RESEARCH AGENDA

ROLAND THIJS

I am an academic neurologist and work at the LUMC and for SEIN. I am closely committed to the foundation because of the disease of my beloved wife. In the Medical Advisory Council of the Stichting Ushersyndroom I can share my academic experience and so make a contribution to scientific research into Usher Syndrome. Research is the only way to stop this disease with its far-reaching effects. Whether this research will lead to breakthroughs depends on asking the right questions and proper performance of the studies involved. I want to see to this in the Medical Advisory Council.

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CINDY BOER

I work as a scientific researcher specialised in genetics at the Erasmus MC. I have been familiar with Usher Syndrome already from a young age, as several members of my family members suffer from Usher. In particular my grandmother, my great example and my heroine. She also was always interested in science and even while I was still studying, I told my grandmother about the most recent developments in scientific research into Usher. When I was diagnosed for Usher myself in 2017, this even strengthened my motivation to use my knowledge to find out as much as possible about Usher and to make good use of this knowledge. Therefore, when I came into contact with the Stichting Ushersyndroom, I knew that I wanted to devote my knowledge and experience to this right away. Scientific research is the ultimate way to find treatments for all Usher patients. This is what the Stichting Ushersyndroom wants to achieve and I will contribute to this by participating in the Scientific Advisory Council.

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DONNA OLIVIA DEBETS

My name is Donna Olivia Debets, and I work as a scientist at the pharmaceutical startup Ambagon Therapeutics in Eindhoven. I joined here after completing my PhD at Utrecht University, where I specialized in the expression and function of proteins in cancer.

I came into contact with Usher syndrome through my niece and subsequently became involved with the Usher Syndrome Foundation. As a member of the Research Advisory Board, I hope to apply my scientific and biochemical knowledge to contribute to sound scientific research on this condition. The significant advancements made in the scientific community lead me to believe that solid research can result in substantial improvements for people suffering from this disease.

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EMILE COSSEE

My motivation to become a member of the Medical Advisory Council is that my daughter has been familiar with Usher Syndrome since she was seventeen. I have worked as a general practitioner in Haarlem, the Netherlands, for 34 years and I stopped my practice some years ago. I am highly interested in the background of this disease and any treatment. In 1993, when the Internet was not as extensive yet as it is now, searching it was a great deal of work and Machteld and I visited many meetings of the then patient association. On these occasions I always saw a group of positive ‘Ushers’, who eagerly took in all the news, but who at the same time knew that this was not the expected treatment for their disorder. I want to contribute to this search in the Medical Advisory Council together with other stimulating people with medical backgrounds.

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