"The courageous Dr Davis": reading to your child & advocating finding cures for rare conditions

This story brings together two great things that don't appear to be linked at first glance:

1. Family story time

2. Advocating finding cures for rare conditions.

Many of you will have seen this story on 60 minutes Australia on Sunday 19/10/14, about "the courageous Dr Davis". (Such a good rhyme!)

If you missed it, you can catch up with the episode on line here.

Dr Ian Davis was completing his training as a haematologist, and working in treating patients with cancer, when he noticed weakness in one of his feet. After a series of tests, the diagnosis of exclusion was Motor Neurone Disease (MND), also known as ALS or Lou Gehrig's disease.

Even if you didn't know about MND before this year, you probably at least heard the name mentioned while all the ice bucket challenges filled up your facebook feed and news reports this winter. That campaign copped some flack, because there were plenty of people posting ice bucket challenge videos without mentioning MND or donating towards finding a cure. However, foundations working towards cures for MND in Australia and the USA all reported record donations. And it got a lot of people talking.

In MND the body's motor neurones are gradually affected. Weakness often starts in one area, as it did with Ian in his foot, and slowly spreads throughout the body. It eventually affects ability to eat, talk and breathe. A person's intellect and awareness remain completely intact as this happens. Patients live on average 2 or 3 years after diagnosis. It's a cruel disease.

Ian wrote this article as he was coming to terms with his changed future, and as he searched for a way to make a difference. He's done some amazing things since then, including...

Setting up a partnership with a local craft beer producer, getting Cavalier Courage on the shelves and donations from its sales going to MND research.

Completing a ride from Brisbane to Sydney on a modified tandem bike with his friend Scott, who sadly passed away earlier this year with MND. The pair and their team filmed their adventure. The movie, called "Legacy- A ride to conquer motor neurone diesease", is in production at the moment, and we're looking forward to it coming out (read more here).

Ticking experiences off his bucket list, like sky diving.
Travelling around Europe following his favourite band, Pearl Jam; making friends with the guys; and joining in on stage with some passionate tambourine action for the final show of their tour.

Setting up the Cure for MND Foundation to raise funds for MND research.

Preparing a fund raising golf day coming up in February at Cape Schank.
And the biggest one, becoming a parent to the gorgeous Archie with his wife, Mel, this year.

But through all of this, it's his attitude of acceptance and making the most of life that seems to influence many people around him.

Which leads us to the story telling.

Ian knows that he will lose his voice and ability to read to his son. He's started to get worried about it, and has been videoing himself reading story books to Archie. He knows the importance of family story time, and these videos will be priceless treasures to the family when his voice starts to fail.

There's an enormous amount of research available about the benefits of family story time in forming strong relationships, and developing communication and literacy skills.

This Melbourne research found the frequency of reading to children at a young age was directly linked to their school performance, regardless of their family background or home environment. Reading to children at 4 to 5 years of age:

3 to 5 times per week led to them being 6 months ahead in reading and cognitive skills later in life;
6 to 7 times per week led to them being 12 months ahead in reading and cognitive skills later in life.

This paper found that reading to infants and toddlers promoted development of their expressive and receptive language. The earlier the reading started, and the longer it was continued, the bigger the benefits.

This website talks about literacy skills and ways to include reading in your family's life. It has some links to great resources, ideas for children experiencing difficulties in learning to read, and some ideas on reading to babies, like:

using small, easy to hold cardboard books
singing as well as reading
experimenting with texture and feel books
talking about the pictures eg. Where's the dog? What's he doing?

This is a great website about things to consider in reading time with your little one:

A for ALOUD: read aloud with your children
B for BASIC SKILLS: at kindergarten age children can learn to: retell a story's beginning, middle and end; understand basic literacy concepts (eg. print moves from left to right; print and pictures convey meaning); begin to know some letters
C for CONVERSATION: including asking questions that require more than a 1-2 word responses.

Awareness raising and action

There are growing numbers of people raising awareness about illnesses, disability and social justice causes by telling their own story. I aim to share these stories where I can.

There's also growing conversation around the value of 'awareness raising' through stories, clicking the 'like' button and retweeting. I've participated in some of the Changemakers festival events this week in Melbourne and there's plenty of people trying to nut out how to engage the public, both in sharing stories and in getting people to participate in real life.

For all you advocates, fundraisers and story tellers out there, one of the simplest things is giving people a call to action at the end of your story. If you want to raise awareness, encourage people to tweet out your post. If you're wanting to raise money, show them how to do it. So here's my closer:

The personal connection.

I went through my phyiotherapy course at Melbourne University with Ian, before he went on to become a doctor. I'd love to encourage you to read a story to a child, donate to Cure for MND, drink Cavalier Courage, enjoy a game of golf next year, and come along to see an awesome movie when Legacy for a Cure comes out. Looks like we'll all be busy ;-)