Thursday, 21 August 2014

Ice Bucket Challenge Q&A

I was really trying not to write a post on my blog about this.... However, I have spent A LOT of time talking to many people and trying so hard to get my point across. It has been playing on my mind so much, that I thought if I just write it all down in one blog post then I can give the link out all over the place. If people choose to read it, that's up to them. If they don't, they maybe weren't worth my time in the first place! 

The Ice Bucket Challenge - Q&A

1. Q.  'I've never even heard of ALS!'
A. Exactly. ALS = Amyotrophic Lateral Sclerosis. This is what it is known as in America. In the UK, you will hear it being referred to as MND - Motor Neurone Disease. They are the same devastating condition, and the fact you haven't heard of it highlights that more awareness needs raising. Click here to read a little bit more.

2. Q. 'The Ice Bucket challenge is for ALS in America and Macmillan in the UK isn't it?'
A. Macmillian have certainly advertised that they are the correct place to donate to when taking the challenge. They have sponsored posts on Facebook and come at the top of the Google searches when asking who the correct charity is. In 2013, Macmillian raised £186.9 million. £38.5 million of this was spent on direct marketing. 
In 2013/13, the MNDA raised £2.4 million. 
That's why they rely on word of mouth and cannot pay to come top of searches. 

3. Q. 'So ALS/MND isn't a form of Cancer?'
A. No. It's a terminal neurodegenerative disease with absolutely no cure.

4. Q. 'I don't know why people are getting so annoyed, what does it matter if money is going to charity?'
A. After hearing a loved one has a condition that will trap them inside their own body, stop them from moving, speaking and eventually breathing, a condition that is terminal and has an average life expectancy of 2 years, MND campaigners spend every single day praying for a cure. 
When you know somebody who has the condition, you want the World to know about it. You want everybody to see their bravery. Yet, and I know from personal experience, not a lot of people do know about it. On diagnosis, friends will say 'oh dear, I hope you get better soon!'.... even (and speaking from personal experience) when you fall and smash your head open trying to get out of your back door, your A&E doctors will not know how to treat you, because even they haven't heard of it. 
This is why MND campaigners are so protective of raising awareness. This is why it matters what charity the money goes to. Everybody is fighting their own battles, and everybody will choose their own charity, but do not mix the messages up. 

5. Q. 'I still don't understand, what do you mean by mixing the messages up? People are still talking about it!'
A. Because people have such limited knowledge of MND/ALS and because it is called different things across the World, it's very important to have a clear message. Only this morning, the Sun Newspaper have written they have taken the ALS Ice Bucket Challenge and told their readers they can donate - giving the MacMillan link. This leads to many misconceptions - including the above - that ALS/MND is a form of Cancer, or that you can choose to donate to any charity. 

6.Q. 'Are you saying this condition is worse than Cancer?' 
A. I think this is a very unfair question and the only reason I am including it is because I have been asked it this week. Two of my best friends have had Cancer. They fought it and they survived it. Their lives changed forever, but they always had hope. This is, by no means speaking for everybody who has been diagnosed, suffered with, or lost their battle with Cancer. I have no opinion on the question, 'is this worse' because if a person is suffering, you can never say one disease is worse than another. They all cause heartbreak and pain. All I do have to say is this - my Husband is fighting MND. Currently their is no cure. The only hope to find a cure is money to fund research. The only way to get money to fund research is to raise awareness. The only way to raise awareness on a large scale is with campaigns like this one. People fighting MND deserve to have hope for their future. Don't take this away from them. 

7. Q 'Right I have all of the facts, but I still have other charities close to my heart that I would prefer to donate to'
A. Donating to charity is a very personal choice - but why not do something great this week for your own charity? Remember when the bare faced selfies happened? Think back and imagine how you would have felt, or what the World would have done if somebody else came along and tried to change the message. The MNDA watched and applauded and prayed that they would have their turn one day, and now they have.  Like everything, this moment will pass, but for now, why not let the MNDA have their moment of awareness? Still make a donation to your own charity - and tell people you have! And you don't even have to chuck a bucket of ice over your head for the pleasure! 

8. Q 'You've got a lot to say about this, are you doing it yourself?'
A. Yes, I am tomorrow. We have almost tripled our target and I am so grateful to everybody who has donated. See more here.

9. 'This whole thing is just causing lots of arguments!'
Please try to remember - conversations are getting so heated because people are so close to the causes. This shouldn't be turned into an argument, this is people's lives. Everybody is fighting a battle you might not know about. Be kind always. Listen, learn and respond.

Seeing ALS/MND all over the media this week has conjured up so many emotions. Watching videos of people suffering, seeing the MND community begging people to let our loved ones have their moment of awareness and trying to desperately educate people so they understand the condition has been tiring, but worth every second. For every single person who has found out about MND, this is worth it. For the look on my Husbands face when he watches his friends and family taking the challenges for him. And for most of all, the hope we all cling to has been renewed again. 
People have heard about us, please help us to keep it that way. 

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