Welcome at the site of Team Nanoek. As parents of a daughter with a metabolic disease we want to raise awareness to metabolic diseases in general.
Our goal: more attention, research, treatment and/or cure for metabolic diseases. Read more about our intentions and motivation on this site.
About metabolic diseases
Our daughter Nanoek has a rare variant of the metabolic disease Tay-Sachs (juvenile). It has to do with the lack of the Hex A enzyme that is capable of removing or re-using waste from cells. In normal cells not a real problem as cells replace themselves. Unfortunately, this is not the case with brain cells. Therefore, more and more cells are damaged.
More and more cells are damaged. This results in loosing skills: basic body functions will slowly get worse and eventually disappear.
Nanoek turned 13 at the beginning of 2016. She can not walk or drive her wheelchair anymore. She lost her ability to speak now and functions like a small child. Her hands shake and she has a lot of problems such as seizures, eating, falling asleep. She needs help with 'everything'...all things that are normal for healthy people....dressing, washing, tooth brushing, combing her hair.... Also she has no idea about what time it is, what day, how to read, write or count....not anymore.
Luckily Nanoek is a very happy girl. She loves to be read aloud, pet her dogs, cuddle and laugh every day.
More information about Tay-Sachs can be found here hyperlink to a web site about Tay-Sachs disease
Information from the NTSAD site: Tay-Sachs is a genetic disorder caused by the absence of a vital enzyme known as Hex-A. This missing enzyme causes cells to become damaged, resulting in progressive neurological disorders. A cure for Tay-Sachs does not yet exist.
2013: 125 cyclers €56.000
2014: 135 cyclers €85.000
2015: 150 cyclers €90.000
2016: 175 cyclers €120.000
The Swiss Sponsorship
Because of the attention we got form beyond the Dutch border (Swiss) and our German is not that good we decided to write a few words in English. No doubt with growing attention these English pages will grow as well.
Many thanks to Eric and Debby. Uncle Eric moved to Swiss after he met Debby and decided to stay. This I can imagine as they live in a beautiful village on top of a mountain near Basel.
When they called in 2014 that they wanted to contribute by sponsoring the Stofwisseltour and Team Nanoek we were cheerful, specially when we learned how. On Eric’s birthday he invited his friends and family and asked them for a gift, a financial contribution for Team Nanoek, the Stofwisseltour and with this they directly support research to metabolic diseases.
One year later, in 2015, Eric joined us in the team. He trained a lot in 'his' mountains and couldn't get off his mountainbike all three days long. You can imagine that he got very enthousiastic and wanted more...
In 2016 Eric cycled from Swiss !!! to Holland and joined Team Nanoek during the three days of the Stofwisseltour. He biked every mile of it with a big smile on his face. He liked it so much that he did it again with the Stofwisseltour in 2017. He even cycled home after the Stofwisseltour! Well...we have a funny team with sportive man and woman but the is really awesome. In 2018 Eric joined our team in one of the 2 vans. We call this the 'bezemwagen'. Together with brother in law Hans they provided the cyclers from food, drinks and helped them out with technical issues. A very important job and also nice to do. We very much appreciate what our 'Van-man' do for the team.