ThumbPrint article by Colin Fenwick
April 2014
Colin Fenwick member of the SMND RAG wrote an article for ThumbPrint to raise awareness of taking part in research.
Read his story on page 5 of ThumbPrint magazine Winter 2014 (PDF, 2.7MB) or see the extracted article below.
Colin Fenwick's article for ThumbPrint
Donating DNA Samples
Colin Fenwick and his wife Alison both gave blood samples for the DNA Bank in 2011.
Colin, 49, from Macclesfield said: “I had a formal diagnosis of MND at the end of 2010 and am lucky in that I have fairly slow progression. I have not lost my voice although my arms and legs are weak.
“My wife and I both have a scientific background (in molecular genetics and geochemistry respectively) so take an interest in research and are also always keen to get involved in any project that will help research of MND.
“It is exciting that we have helped contribute to such a major resource for researchers and that it is now accessible from anywhere in the world.”
In addition, both Colin and Alison are active members of the Sheffield Motor Neuron Disease Research Advisory Group (SMND RAG).
This group meets once every three months to discuss research into MND that’s being carried out in Sheffield both at the hospital and at SITRaN.
The group discuss how patients can be better informed about research and advise researchers how they can more effectively communicate with patients.
Colin said: “Being members of the SMND RAG has given both of us an insight into how important it is for patients to get actively involved in research. We’d encourage anyone reading this to join a group like the SMND RAG or if there’s nothing in your local area then talk with your MND Care Centre or the Association about how you can get involved.”
Jennie Pierce from Congleton, in Cheshire gave a blood sample in 2011 together with her husband Pete, who is living with MND. She said: “We both felt very strongly that it was something we wanted to take part in. We always knew it would not benefit Pete but you have to look to the future.
“With grandchildren, it is important to us to do everything we can to try and support finding out more about MND in any way we can. Pete doesn’t have the inherited form of MND but there is still so much more to be known about the disease that makes this DNA Bank vital.