In England we call it Motor Neurone Disease, MND for short, in America they call it Amyotrophic lateral sclerosis, or ALS. The ALS Icebucket Challenge, where you endure pouring a bucket of icy water over yourself has become an internet sensation, and at the same time raised hundreds of thousands of pounds into research for this illness.
On Tuesday morning I woke up to a Facebook post from my cousin Jack asking me to accept the challenge. My initial reaction was to say “I’m going away, I won’t have time” but that’s not like me so I did it, all by myself at 6am in the morning. I posted the video on Facebook, challenged three chaps to do the same and added a link to the MND association donation page on their website.
Later that evening I noted a thread on Twitter about it, so I posted three still from my video. A discrete DM told me that ALS are involved in embryonic stem cell research. My blood ran cold. This is something I should have known and couldn’t understand how I didn’t. I know we all make mistakes etc etc yada yada yada but I was very disquieted by this.
I did what all good Catholic boys do in this situation, I prayed. I prayed all day Wednesday about it, at every possible opportunity I prayed, and two lots of those prayers I was able to offer in cathedrals, for which I was grateful. When I did vespers on Wednesday I felt as if I was being spoken to by God, the antiphon to the first psalm was “How wonderful is this knowledge of yours that you have shown me, Lord” and the short reading was 1 John 2:3-6 “anyone who says ‘I know him’ and does not keep his commandments is a liar”. It was as if God was saying “stop praying and act Tony, then all will be well”.
Having prayed I emailed the Motor Neurone Disease Association and voiced my disquiet. The email was not sent until the end of the working day. Today I received a reply saying this: –
“With regard to stem cell research, current research funded by the Association only uses induced pluripotent stem cells. These are engineered stem cells and are created from the skin cells of someone living with MND. The researchers then reprogram thess skin cells into stem cells, which they can then manipulate to become motor neurones.
These ‘stem cell derived motor neurones’ are useful for researchers as they enable us to study what’s happening in living human motor neurones affected by MND (this was something that was deemed science fiction in the early 2000s – we could only study post mortem tissue previously). These stem cell derived motor neurones also allow us to use less animal models in our research and have the potential to become an effective drug screening tool.
Therefore I would like to reassure you that currently the Association does not fund research into the use of human embryonic stem cells – all our research currently uses the above type of stem cell and I have attached our information sheet which explains more about these projects in more detail should you wish to read more about this research.”
I was greatly relieved as you can imagine. If anyone wants to see the email themselves, leave me a comment and I will forward it to you. I was also grateful that I donated to the right charity, I can only thank my guardian angel for that one.
Update: A personal perspective from my Facebook friend Shirley Weatherby: –
Motor neurone disease as it is known as in the UK an incurable terminal and devastating disease. Fought with courage by my later husband Allan back in the early 1980’s – who lost his fight for life through it at the tender age of 31. David Niven the famous actor also died of it and it was his publicity and his thumbs up in hope of a cute that gave MNDA the logo it has today. Unlike the American ALS that use embryo stem cell research which would stop me giving to ALS charity for that very reason. Though I do support and would happily give to MNDA. My husband now, Fr Peter Weatherby and myself both launched with help, awareness of MND by starting the MNDA group In Reading in Berkshire in 1986. MND does not use embryo stem cell research and if you read the next post below (Which is mine above TF) you can see what they had to say about that yesterday.
It is devastating and heartbreaking watching a loved one suffer with this disease. A cure was never to be in my husband’s life time for him to watch his 3 babies of 1, 4 and 5 grow up into the beautiful young adults they are today, 36, 35 and 32 all outlived their own daddy in heaven already. He is very proud of them as I’m sure he is very proud of them as he watched over them. I’d love to see a cure for MND
—–and back to me. I said on Facebook when I posted the reply from MNDA I was very aware of the word ‘currently’being used in the reply. My future relationship with MNDA will be subject to me monitoring this.