OUR AMBASSADORS
JOYCE DE RUITER
At 16, I was diagnosed with Usher syndrome type 2A, just like my brother Marc.
With a strong drive to always see possibilities, I fully enjoy the big and small moments of happiness in life with my husband and our two beautiful daughters.
A doctor’s comment that I wouldn’t have value in society only fueled my determination to prove that Usher syndrome has also given me unique qualities.
I completed two university degrees and discovered that I could use my personal story as a strength in my work.
I combine my knowledge, vision, and personal life story in tailor-made lectures and leadership sessions.
Through my story, I inspire professionals, entrepreneurs, managers, and employees on how to be resilient and adaptable to change. As an ambassador for Stichting Ushersyndroom, I regularly share my story in the media, and I always bring attention to the foundation in my presentations.
I am constantly seeking ways to increase awareness of Stichting Ushersyndroom and raise donations to fund hopeful scientific research. Together, we can make our dream of continuing to hear and see come true!
MACHTELD COSSEE
My name is Machteld Cossee, and I live in Haarlem with my two children. I have Usher syndrome, but despite that, I am active in running, yoga, skiing, tandem racing, and walking. I also love cooking, reading, and having friends around me. Additionally, I work as a lifestyle coach at Allemaal Vitaal.
On Monday, February 9, 2015, the film “The small World of Machteld Cossee” was released. In the fall of 2015, I gave a TED Talk in Breda titled “What You See is Not Always What It Is.” Since then, I have given lectures for various organizations, fairs, and meetings about living with Usher syndrome.
The news of hopeful developments for a treatment for Usher syndrome makes me want to contribute as an ambassador for the Usher Syndrome Foundation. I do this by supporting various projects for the foundation. I also hope to inspire all Ushers (and those involved) to contribute to Stichting Ushersyndroom: for and by Ushers!
Website: www.allemaalvitaal.com
KOEN VERSLEIJEN
My name is Koen Versleijen. I was born (1990) and raised in Horst, North Limburg, where I live with my daughter, Jet. Since 2015, I have known that I have Usher syndrome 2A. In the beginning, the deterioration was slow, but unfortunately, in recent years, it has sped up. My hearing loss is still relatively manageable, and I do well with hearing aids.
In 2020, I was declared unfit for work. I had been working with joy and passion in disability and elderly care. After several years of setbacks, I started my own business in 2022. Now, I give lectures about resilience and dealing with adversity, with Usher syndrome playing a significant role in my story.
It is a great honor to be an ambassador for the foundation. During my lectures, I often get questions about the syndrome, and as an ambassador, I hope to raise awareness about it and bring in funds for research. I look forward to meeting new people and hearing their stories. I may not be able to rid the world of Usher syndrome, but I am eager to contribute to the wonderful work the foundation is doing!
Website: www.koenversleijen.nl
