For me, the realization that research is being done into the unraveling of the Usher Syndrome is the main motivation behind the work for the foundation. In 2015 I started in the campaign team and from 2016 I joined the board. First as general board member and from 2019 as chairman.
My deepest wish for a solution to Usher Syndrome gives me a lot of energy. I suffer from Usher Syndrome myself. My now 2 grown daughters know all too well the challenges I face every day.
It is fantastic to work together with other Ushers, parents, partners and children, towards our common goal; increase brand awareness, share knowledge, stimulate research. promote contact with fellow sufferers and realize dreams.
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.
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.
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.
Do you enjoy shaping the Marketing and Communication Policy at a foundation in change? Do you have enough tact and perseverance to get a volunteer group along? Then we would like to get in touch with you!
The Usher Syndrome Foundation strengthens its current board by expanding the board from three to five board members. She is looking for a Communications & Marketing board member to expand the board. In its new composition, the board will consist of: a chairman, a secretary, a treasurer, a general board member Fundraising and a general board member Communication & Marketing (vacancy).
If you have a question for the board of the Usher Syndrome Foundation, take a look at our frequently asked questions. Can’t find a suitable answer there? Please contact us.