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.

Loosing skills

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.

Information

 

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.

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Stofwisseltour of 2012 and 2013 was a great challenge ! The tour in 2014 was even better ! We joined the tour in 2015 & 2016 & 2017 and will cycle again in 2018!

 

2013: In the third weekend of June the third  tour through 14 'stofwisselpunten' and alll Dutch Academic Hospitals were completed by bike. A route of almost 900 kilometer. Team Nanoek joined this initiative with a full team.  Complete with support and material wagon and mental support  (Hans)  we were able to fulfill this mission.

In 2014 an even bigger team completed the stofwisseltour! 

 

2013: 125 cyclers  €56.000

2014: 135 cyclers  €85.000 

2015: 150 cyclers  €90.000

2016: 175 cyclers  €120.000

2017:  more....

The main goal is to get attention for metabolic diseases and of course find sponsors to be able to fund as much research as possible. This is necessary because the majority of the children diagnosed with a metabolic desease will die before the age of 18. In the Netherlands around 800 children each year are diagnosed with one (of the over 600) metabolic deseases.

In june 2015 we cycled the Stofwisseltour again !  500 km + Half of our team consists of young people from under 16 years old !

In 2016 we joined the Stofwisseltour again. One of our familymembers even started from Switserland ! 

In 2017 we also cycled the 3 days tour of the Stofwisseltour. As every year, we started in Haren and ended up in Amsterdam the 3rd day.

Our team consists of friends and family from Holland and Swiss. In 2017 also an employee of one of our sponsors joined our team. In 2017 all of our three children joined us cycling and taking pictures. Nanoek started the tour on her special-kids-bike.

When you want to join, sponsor or help in one way or the other,  please let us know! You can This email address is being protected from spambots. You need JavaScript enabled to view it. us or send a message via facebook.

 

 

 

 

 

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. 

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Kind regards.

Swiss sponsorship