Cork dad with MND speaks out in quest for silence ambassadors 

Caleb Sheehan, 51, whose voice has been impaired by motor neurone disease, is asking people to sign up to sponsored silence in support of the estimated 400 people living with MND in Ireland

Caleb Sheehan is the face and voice of the Irish Motor Neurone Disease Association's national campaign this month to raise awareness of MND, and recruit 'silence ambassadors' to take on a sponsored silence in support of the estimated 400 people living with MND in Ireland.

A Cork dad whose voice has been badly impaired by motor neurone disease (MND) is speaking out as part of a major fundraising and awareness campaign.

Caleb Sheehan, 51, is the face and voice of the Irish Motor Neurone Disease Association's (IMNDA) national campaign this month to raise awareness of MND, and recruit "silence ambassadors" to take on a sponsored silence in support of the estimated 400 people living with MND in Ireland.

“My speech is significantly impaired, and my swallowing has become more problematic, but I’m alive. I have hope,” he said.

MND is a progressive neurological condition which attacks the motor neurones, or nerves, in the brain and spinal cord, so the messages gradually stop reaching muscles, which leads to weakness and wasting.

It can affect how you walk, talk, eat, drink and breathe and more than 80% of people living with the disease will experience some form of speech difficulty during their illness — some will lose their voice completely.

Caleb Sheehan and his daughter Lucy are highlighting the IMNDA June sponsored silence #Voice4MND.

Mr Sheehan was diagnosed with MND in 2022 and while he can still talk, his speech has been significantly impaired.

“My MND journey began in late spring 2021 when I noticed a tremor in my right shoulder. The muscle seemed to be rippling under the skin,” he said.

“I attended my first MND clinic and drove back to Cork that evening where we broke the news to our families. We did not tell our kids at that point, and we decided to wait until the end of the school/ college year.

As the disease progressed, I began to miss the everyday routine things that I can no longer do. I missed kicking a ball around with my son or training my daughter’s football team, simple everyday things we all take for granted."

He said he grieved for his old life until one day it struck him that he wasn’t living and that wasn’t fair to his family and friends.

“I knew that I had to get back to living so that is what I have been trying to do.” 

He has now issued a special appeal for people to sign up to the IMNDA’s sponsored silence campaign #Voice4MND this month.  

Those taking part will be asked to stay silent for a minimum of 30 minutes to experience what it would be like to lose your voice.

“All you have to do is to pick a day and duration for your silence,” a spokesperson said.  

You can sign up for the sponsored silence campaign at imnda.ie and fill out the online registration form.