Coast to Coast Fundraising for Motor Neurone Disease
As a Community Speech and Language therapist, my role involves supporting patients with Motor Neurone Disease. I am able to support them with the communication and swallowing difficulties they experience as the disease progresses. I often feel a sense of privilege that I am allowed into their bubble to help them on their journey.
So when I saw a post on Facebook from the Motor Neurone Disease Association (MNDA) regarding their Coast to Coast Challenge involving a virtual bike ride, it got me thinking. Within about 4 days, I had planned a route and borrowed an exercise bike from a friend and was good to go.
The plan was the coastline from Canada down to Mexico, totalling in 1729 miles. I had worked it out to be 55 miles a day for 31 days. I had initially set a target of £450; this would pay for an iPad with a text to speech app installed. The Motor Neurone Disease Association lend out equipment to patients who need it including communication aids.
Soon enough, within about 4 days, we had surpassed that target. After a little bit of maths, I decided to increase my target to £1250. This would pay for two iPads, two text to speech apps, four days in a research lab and it would also pay for two people to bank their voice.
Voice banking is a process that allows you to record a set list of sentences with your own voice. The recording is then used to create a synthetic voice. A banked voice (although synthetic) will sound like your natural voice although it won't be a perfect replica.
It is recommended that people who are diagnosed with MND/ALS bank their voice soon after diagnosis as they may eventually lose their ability to speak and need to use a communication aid.
The ride was hard going, and non stop; every morning early doors, I would be up peddling away, then back to it each evening. With a few birthdays and a short break in Alton Towers, I started to get behind. I decided to add two days onto the challenge, but this also meant an increase in daily miles to 80-90 miles a day. I would say the last week or so was the hardest, as once I had added the two days on, I was determined to finish in 33 days. I really did not want to add any more time on!
I was keen, not only to raise money, but raise awareness too. I posted about different aspects of Motor Neurone Disease, such as voice banking and swallowing difficulties across my social media. I think that helped people understand why I was doing this mammoth task.
As the challenge came to an end, I began to feel a sense of guilt. I felt guilty that I could merrily hop off my bike after 33 days and carry on with my life, but I knew my patients could not ‘get off’ their diagnosis whenever they wanted. But then I reflected back on all the donations that had come in, and the amount I had raised, and I felt glad that so many of my patients would benefit from the funds directly.
So at the end of 33 days, I had virtually passed the Mexican Border and cycled 1,729 miles, completing my Coast to Coast Challenge. On average, I was cycling 2.5 minutes per miles which equates to 72 hours of cycling!!
The aim was to complete the challenge, raise some crucial funds, and raise awareness, and I'm very pleased all three can be checked off.
The Motor Neurone Disease Association is a registered charity in the UK that provides services and support for people diagnosed with MND. If you would like to help Kelly raise more vital funds for the MNDA, please click/press here.
About the Author: Kelly Chubb is a community Speech and Language Therapist who specialises in acquired progressive neurological conditions. She has been qualified 6 years, and currently works for Medway Community Healthcare in Kent, England.