Chris and I have been invited to a very special event this week regarding the Ice Bucket Challenge of 2014, which I will write about later in the week.We were shocked and honoured to receive this invite and to be honest wondered why we were invited at all, humbled is not the word. Anyway, before then here is a catch up on what the Ice Bucket Challenge was all about.
Last summer a phenomenon occurred, it was the Ice Bucket Challenge. It started in the US, first when Anthony Senerchia from New York, who has MND (ALS), was challenged to do the Ice Bucket Challenge by golfer Chris Kennedy. Peter Frates, a former baseball player who was diagnosed with MND (ALS) in 2012, also did the challenge and he posted it on his social media and the rest, as they say, is history. It quickly spread, especially when celebrities came on board and funds for the ALS association in the US poured in, passing the million mark many times over.
Paula and Robert Maguire here in the UK, felt the MND association here might benefit from this craze and they set up a Just Giving page with the plan of raising £500. They posted this on social media and it took off here too and ended up raising an incredible amount of money, over £4,000,000 to date, just a little more than their original £500 target and over £7,000.000 in total was raised altogether with the donations that were paid directly to the MND association itself.
How did we get involved with this? Well in a very small way by doing our part not long after Paula and Robert set the challenge. Chris had only been diagnosed a few months, but I had already gotten to know many people via social media who had or are being touched by MND in some way. I was already following Robert and Paula, especially after finding out about Paula`s immense fundraising efforts for MND after losing a family member to it a few years ago.
You feel so helpless when you first hear this diagnosis, we did a Bake it Day in June, a few weeks after, as we felt we needed to do something to help fight this awful disease. Then when Paula and Robert posted the challenge we decided to do it a couple of days later as a family and shared our videos and donated as requested. We managed to get many other family members and friends to take part too which was just brilliant. We just wanted to help Paula and Robert reach their £500 target.
The excitement that grew from this phenomenon was palpable and contagious, the figures kept growing, the fund might hit a £1000, no, £10,000, before we knew it was hitting £1,000,000!!
What this meant to everyone who has MND or lost someone to it, well you just cannot imagine
what this felt like. It gave us hope, it meant suddenly people were finding out what MND was and awareness was growing by the day.
There were frustrations though along the way. There was immense confusion between MND and ALS, not helped by the lack of knowledge in the media. They seemed to have no idea that ALS was MND, just by another name, in fact ALS is just one form of MND. Some people thought it was a type of cancer and started donating to cancer charities instead. Now no one was saying people shouldn`t donate to cancer charities, we have all lost someone to that dreadful disease too, but MND is a relatively rare disease, it is an underdog charity in that sense, it gets no government funding and cannot afford major advertising campaigns on the TV to help boost funds. It relies entirely on donations and fundraising and it was MND`s chance to take the spotlight and be noticed. I believe around £3,000.000 a year is the amount of fundraising that usually comes in to the MNDA, so you can imagine what it felt like for over £7,000,000 to be raised in such a short space of time.
Once the MNDA got properly on board though and interviews were done on news channels and daytime TV by people actually living with this disease and from the MNDA themselves, did the message finally start to get across.
Of course there was a certain amount of negativity from all of this, some people didn`t `get it`, felt celebrities were using it as a way to show case themselves, others were doing the challenge and posting it on social media with out donating or even mentioning MND, but that was to be expected and I personally don`t care as to the reasons why people did the challenge, but that they did it and that mostly it highlighted ALS and MND around the world and raised millions in the process.
Recently I saw a video that talked a little about MND research, it said that they needed to sequence 20,000 human genomes in order to study the genetic causes of MND. Each test costs £1000, so that is £20,000.000 needed to just do that, so really at the moment, there is never going to be enough money for research, so you can see that even the UK IBC funds are just a drop in the ocean. Thankfully, as this is a global disease though, the research is global too and so is the fight to find a cure.
Recently awareness has been raised even more with the film about Professor Stephen Hawking , `The Theory of Everything`. Winning awards is brilliant for those who took part in the film, but the awareness that has been raised is priceless.
People`s memories fade fast, even now there are many who have no idea what this awful disease is, in spite of all the recent publicity, so raising awareness is a never ending battle, because awareness hopefully equals donations and every penny donated is a step nearer to finding a cure one day.
Chris, myself and our family would like thank everyone who took part in the Ice Bucket Challenge and donated. Also anyone who has ever donated in other ways or taken part in the many fundraising events around the country and the world, with the aim of helping to find a cure for this vile disease. The war may not be won in time for those with MND like Chris, but we have to hope that future generations will be spared the pain that this awful disease brings and that there will one day be an effective treatment.
The Ice Bucket Challenge hopefully started one big ball rolling and long may it continue.
THANK YOU.
