CWT supports FSHD-projectMaureen Ramaker
My name is Maureen Ramaker. Because of my illness FSHD, a muscular dystrophy, I had to give up working at Carlson Wagonlit Travel after a career of 25 years.
My daughter Anouska also suffers from FSHD.
FSHD has a huge impact on our family life. You’re not alone with FSHD!
My husband Ab is our carer, he does a great job of taking care of both of us and all the things Anouska and I are simply not able to do anymore. Besides his care responsibilities Ab is now in training for the Eleven Cities Bicycle Tour (Fietselfstedentocht), which takes place on May 16th 2016.This 235 kilometer cycle tour passes through eleven Frisian villages, starting and finishing in Bolsward. Ab is taking part on behalf of the project ‘Samen ‘fietsen’ we FSHD de wereld uit!’ and hopes to find lots sponsors.
FSHD (Facioscapulohumeral dystrophy) is a rare, progressive hereditary muscular dystrophy caused by a genetic defect. FSHD is one of the most common hereditary muscular diseases: in The Netherlands approximately 2000 people are affected by the disease. Progression can vary greatly and is difficult to predict. However, it is likely to be more serious when the onset of the disease is at a young age. As the disease advances and muscles weaken, patients become unstable. Approximately 20% of all patients eventually become completely wheelchair-bound.
It is important to create awareness, but even more important to generate funds for new research to find a cure for FSHD. The sooner the better!
Last year the Prinses Beatrix Spierfonds started a campaign called ‘FSHD de wereld uit!’. This, in collaboration with the Dutch FSHD foundation and the Dutch Association for Neuromuscular Diseases (Spierziekten Nederland) to raise funds for new research. We have already raised around € 50.000 but we need another € 50.000 to start the extra research. The project ‘Samen ‘fietsen’ we de wereld uit!’ is part of this campaign. We hope to give Ab a beautiful cheque at the finish of the tour in Bolsward, let the research start!
Will you help me by donating?
Great! Donating is very easy. Simply click on the ‘doneer direct’ button. You can donate by using your credit card, Ideal or through a bank transfer. If this doesn’t work you can always contact me by e-mail so I can help you find a solution.
Thanks so much!
You can also start your own fundraising page for this project by clicking here and then share the page with your family, friends and colleagues through social media or by e-mail. If you don’t have any idea what you can do to raise funds, you can contact Anouska at firstname.lastname@example.org
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