OUR BOARD
IVONNE BRESSERS
The realization that research is indeed being conducted to unravel Usher syndrome is my main motivation behind my work for the foundation. I started in the campaign team in 2015, and since 2016, I have been on the board—initially as a general board member and from 2019 as the chairperson.
My deepest wish for a solution to Usher syndrome gives me a lot of energy. I live with Usher syndrome myself, and my two adult daughters are all too aware of the challenges I face every day.
It is fantastic to work together with other Ushers, parents, partners, and children toward our shared goals: increasing awareness, sharing knowledge, stimulating research, promoting peer contact, and realizing dreams.
RICK BROUWER
In 2014, as a member of the campaign team, I began my Usher Syndrome Foundation adventure. Since 2017 I have been involved in all sorts of voluntary work for the foundation in the shadows. I could never really let it go ;-). We have now grown into a foundation as it is today.
In mid-2021 I was asked to take over the treasurer duties. To this question I answered with a resounding “Yes”.
I think I’m in the right place with my financial knowledge and experience.
I am married, have two grown children and enjoy sports. Running, cycling and swimming. As a paratriathlete (I have Usher syndrome type 2C) I participate in various paratriathlons during the season.
As a board member, I want to continue building together to make Usher Syndrome treatable for everyone.
DANIËL RAMIREZ BOCHARD
At 32 years old, I am the youngest member of the board. In 2014, I was first told about Usher syndrome. One of my best friends has this diagnosis and soon I noticed that having normal vision and hearing is too quickly taken for granted.
The vacancy for Board Member of Marketing and Communications was the answer. After graduating in Commercial Economics and having several years of work experience in Marketing and Sales, I applied for this position. The interviews with Ivonne and then the rest of the board made me even more enthusiastic than I was at first. A group of completely different people, but all with the same passion and enthusiasm for the common goal: making Usher syndrome known and standardizing care and treatment.
I am incredibly excited to contribute to this and to start working with all the associated volunteers.
DIEDE HEIJKOOP
When we were told in 2016 that our daughter Usher has 2A, I struggled with this diagnosis for a long time. As a solution-oriented person, it took me quite a while to give the news a place, because unfortunately I didn’t have a solution for this.
Our family now consists of 3 hearing aid-wearing children and we are confronted daily with the challenges that this syndrome entails.
After having had a number of conversations with the board members of the Usher Syndrome Foundation, it feels like a privilege to take on my responsibility in the position of secretary. Hopefully in this way I can contribute to the realization of our big dream; Usher treatable before 2025.
JOHAN DRIESSEN
What can you still do for your daughter when she is mature and independent?
I’ve been asking myself this question more and more over the years. Lotte was diagnosed with Usher 2A at the age of 27 in 2017. Until then we had never heard of the Usher Syndrome, a whole new world opened up to us; my partner and our 3 daughters.
I was trained as a geohydrologist (groundwater expert) in Wageningen. Later completed a management master. I have been working for drinking water company Vitens for 25 years, often working in the strategic field of innovation and technology. I have also gained a lot of experience with conducting scientific research.
All my life I have found it important to commit myself to social causes. In 2021 I stopped as chairman of tennis and padel association Hattem. Now I thought it was time to put my knowledge and administrative experience at the service of the Usher Syndrome Foundation. On the board, my portfolio is fundraising.
Motivated from within. That is what I can do for Lotte and many other fellow sufferers.
ADDITIONAL FUNCTIONS
Our board members also hold other positions apart from their roles as board members within Stichting Ushersyndroom..
Rick Brouwer: He is also a board member of the Running Blind Foundation in Rotterdam and Coordinator at Unique Sports (Maassluis, Vlaardingen, and Schiedam).
Johan Driessen: He is a strategic environmental manager and policy advisor for sources at the drinking water company Vitens. In this role, he has many internal and external contacts at a strategic and administrative level. He represents Vitens in scientific research programs in the field of groundwater technology and sustainable water systems.
Diede Heijkoop: He is the Quality and Development Manager at Strukton Civiel. Together with his team, he is responsible for ensuring that Strukton Civiel complies with applicable laws and regulations. Particularly relevant are Occupational Health and Safety and Environmental legislation. Specific requirements from various certifications and clients also fall under this. By continuously monitoring the organization’s performance, he works closely with operations to identify areas for improvement and efficiency.
Daniël Ramirez Bochard: He works full-time as an account manager at the company Pay. in Enschede.
