ice buckets and forgotten people

Are you bored by the ice bucket thing yet? There’s such a lot of it about. Celebs and randomers getting wet just to make a video and announce to the world that they’re making a donation to charity. Needless, tasteless and narcissistic.

Except… it’s not any of those things.

It’s fantastic.

Until a few weeks ago, how many people were chatting about Motor Neurone Disease (ALS)? How many people were interested in rare disease? Or neuromuscular conditions? How many people were struggling to raise awareness, interest and funds for research, treatments and support?

Often compared to the #nomakeupselfie as a social media notion that went mainstream and raised  much money for cancer charities, the impact of #icebucketchallenge could be much greater. It’s an opportunity for money to go to charities and conditions that are not so well known, and not generally funded. Today the ALS Association announced that they’ve received $68 MILLION more this month than in the whole of last year. Incredible stuff, impacting on often forgotten people.

One in 17 people in Europe is affected by a rare disease. You know more than 17 people.

In Northern Ireland, over 100, 000 people are affected, roughly equivalent to a population the size of Derry/ Londonderry. Because there are over 5,000 rare diseases, numbers affected by any particular condition are small, but collectively rare disease is common. We need to take opportunities, we need to work together. That’s why we created the Northern Ireland Rare Disease Partnership (NIRDP). That’s why we volunteer hours to build relationships, to raise awareness, to support each other.

Tomorrow evening, Belfast Lord Mayor Nichola Mallon will be helping medal winning boxer Michael Conlon complete #icebucketchallenge for the Motor Neurone Disease Association. We’ll be there, cheering them on.

We know what’s it’s like. Girl1 and Girl2 stuck their feet in a basin of iced water. They were drenched by iced water. They know why the water was iced- it’s not about the fun, but the loss of sensation. They know that the shock and helplessness they experienced was temporary and therefore fun. They know it wasn’t like that for their grandmother, Herself. They know the impact of a rare neurological condition. They remember how a vibrant, busy, fiercely independent woman became bedbound, unable to do anything for herself and barely able to communicate. We all remember. So a bit of cold water is nothing to us.


Girl1 ice bucket challenge, NIRDP, PSPAJake

No ice for Jake – we’re not that mean!


8 thoughts on “ice buckets and forgotten people

  1. Ok Speccy You had me going at first….way to be narcissistic.; ) and way to spare poor Jake If he’s like every Westie I know then he Loved it. Thanks for sharing And involving Girl 1 and Girl2 You’re a GREAT MOM!!

    1. Peggy, the girls were desperate to do it! It was they who nominated me 🙂 Chaos, but fun, and a good thing to do. Spurs Fan had to do his when he came back from work, and managed to keep smiling.

  2. Until I read this I didn’t realise the purpose of the ice. And I already took the challenge!
    It would never have crossed my mind. I thought it was just to make it colder, for the craic, like.
    Thank you

    1. That too Frankie! The fun aspect is why it has captured the imagination of so many and raised so much money for all sorts of charities. Whoever you chose to donate to will be delighted that you did- good job!

  3. If it works, and it is fun, they will join in -don’t knock it. To be honest, up to a week ago I hadn’t a clue of this, I guess I was unplugged longer then thought. Though ‘wee-jock-look-a-like’ looks not so amused with the whole affair of ‘for the cause we do this’

  4. It’s just amazing how this has caught on worldwide! I love your photos–so much fun. A good friend of ours passed away exactly one year ago from ALS and I keep thinking about how amused he would be to see the current attention to this rare disease. It was so good of Jake to do his part, too! ox

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