CPActive launch video and transcript now live!

CPActive launch video and transcript now live!
Posted on Thu 13 May 2021

On the evening of Monday, 3rd May Cerebral Palsy Alliance was joined by some very special guests to launch CPActive, a new community of individuals, families, advocates and allies who can speak up to change the system and create lasting change for people with cerebral palsy and related conditions. The full launch video and transcript is now available.

Guests and topics included:

  • CPA Board Director Johanna Garvin on challenging perceptions
  • Lia Sintras on breaking barriers in education
  • CPA CEO Rob White on the legacy and future of the NDIS
  • Professor Iona Novak with an uplifting update on treatment breakthroughs and research innovation
  • Disability advocate Hannah Diviney on her quest to create the first Disney princess with disabilities
  • Plus a very special musical performance!

Thanks to those who joined us from all around Australia and globally - this is just the beginning! For more information about CPActive, head HERE.




Welcome, and good evening.

What a treat to see real faces on screens at 7pm at night. Thank you for joining us.

This is an exciting night at the launch of a new community, CPActive. Before I go any further, please allow me to make an acknowledgement of country.

I would like to start by acknowledging the traditional owners of the land on which we all meet and pay my respects to Indigenous Elders past, present, and emerging.

We have people coming in from all over the state on Zoom and I'm joining you from the lands of the Dharawal people, traditional owners of the land and this always was and always will be Aboriginal Land.

Thank you for joining us for what will be a dynamic and interactive night and discussion.

I am your host tonight, Bronya Metherall. I’m no Ray martin but I’ll give it a red hot go. I have a bit more hair than the usual host.

I have long been involved in the cerebral palsy community and I've been working with CPA for 10 years and have a deep and personal connection to the cause, spanning back to my childhood and my own family.

Before we go any further, just a bit of housekeeping tonight. This is the fun part. The event is captioned and we have Auslan interpreters on standby. They are Imran and Mark.

If you need Auslan, please hover your cursor over the video icon and click the dots in the corner and select the video and then you can keep an eye on them throughout the event.

Then the bottom of the screen, there is a chat window and this is where some of the fun takes place. Please click if you can and open up the chat and introduce yourself.

 Ask questions. We want you to share your views, experiences, reactions tonight.

 We will save the chat and upload that later so that we can store all the wonderful comments and ideas. We are encouraging people to use your full name if you are comfortable and the full name of the organisation you are representing.

When you utilise the chat, please keep it friendly and constructive and positive and supportive. This is meant to be a supportive community atmosphere. From a tech perspective,

 we have support on hand tonight with Hannah and Jane in the chat with you are having tech issues, message them directly and they will be able to assist you. Don't worry.

Finally, if you have not already, please turn your video on if you are able to and you have that capability because it adds to that personal atmosphere and that interactive tone that we want tonight. We want to see your faces so please turn that on.

Last but not least, we are recording the event and it will be uploaded online later so, for anyone who misses out, watch it at your convenience.

Thank you for joining us. This is the kick off night for a new community supported by Cerebral Palsy Alliance, CPActive.

 We will not talk a lot about CPA but, in background, for those who have not been involved with Cerebral Palsy Alliance, CPA is a very old organisation, 75 years old, that was founded in 1945 by a group of very passionate and persistent and ferociously impatient parents of kids with CP who wanted to see a better world and the kind of support that their kids needed to move through with their life.

Since that time, the Cerebral Palsy Alliance has grown into a multifaceted organisation. We provide services and support to thousands of families every year and we have a world-renowned research foundation that is accelerating with exciting breakthroughs for the condition.

In recent years, we have also started an accelerator that many of you may be joining us from tonight. It was a world first initiative to accelerate disability tech solutions to market and make them available to businesses.

Enough about us.

I am really proud to work for an organisation that believes we can do a lot better as a society and an organisation that wants to interrogate some of those issues and do what we can with what we have.

That is what tonight and this community is fuelled by, that kind of hope.

Just quickly, what is CPActive about? What is the vision?

This is about championing for an inclusive society and that means a variety of things to a variety of people. With your help, we want to build a community of like-minded people who are really interested in taking collective action together.

We want to look at the sorts of changes and improvements that we know we need to make for the CP community. We have heard from you over the last many years and in recent months that you want to be more actively involved in that vision and bringing that vision into reality.

We want to kick off the community and bring together wonderful people like you to mobilise action so you can share your stories, views, ideas, and empower each other at the same time.

Hopefully, we can have some fun along the way.

Over the next few months we want to take those opportunities to campaign on key, pressing, overdue issues that require change and that could be everything from improving education to ensure we have an inclusive education model for kids across Australia, to meeting employment truly and genuinely accessible and everything up to implementing an early screening program across Australia for every baby born in Australia, which is a big mission for organisation as well.

By being involved and joining us tonight, you're part of something that we hope will be very special and it is what we think will make this as supporting and empowering as possible.

 There will be lots of ways we will be reaching out to you in the coming months with a variety of big and small actions that you can take with you and, ultimately, by joining a community, we are hoping you will share your experiences and we can help to raise those voices and views with you.

We want to give you the latest access to updates, information, research breakthroughs relevant to CP and similar conditions and also give you the opportunity to do this, meet other like-minded people, inspiring people, some of whom we will hear from tonight.

 I hope you will continue with us on this journey. I promise it will be fun.

In the theme of fun, I would like to turn to a couple of the special audience members who have kindly volunteered to speak up tonight and share some views and experiences. I will start with someone special, Johanna Garvin, who is somewhere on the screen. There she is.

 She is an advocate and she will be very humble but we know that she has spoken publicly on a number of issues over the years and is doing amazing things in the creative space as well. Hello and welcome, Jo.

 I am going to start by asking you if you would like to talk briefly about yourself and your background first.

>> 00:08:35 JOHANNA GARVIN:

I have been a client of CPA since I was diagnosed at the age of one and I work at Create NSW as a communications officer, so doing lots of social media and interviewing lots of people and I also make films on the side about things I'm passionate about like helping people with disability and I made a short film two years ago with the ABC about the whole idea of living with a disability and really wanting to show kids living with a disability that it is something they should be proud of and something I'm always happy to do and I want to challenge people's perceptions of what it is like to live with a disability and sure that it is not a tragedy but just another way of being.

I'm also on the board of CPA so I get to hear about what is going on and it is great to be part of that.


Thank you, Jo. You're not a busy person at all! (Laughs)

We can talk for a long time about some of the brilliant things that you've been doing both in your professional and personal life. I think it would be great in the spirit of tonight, want to talk about the issues that are important to you and what sort of challenges -- changes you want to see in the community?

>> 00:10:25 JOHANNA GARVIN:

Oh yes, sure. I thought a lot recently about the employment of people with disability because it took me a long time to get any sort of paid work. I can't tell you how many times I applied and did not get a call back and I did a lot of work with the CPA, with job finding skills, resume writing, and I just thought to myself often, I just really want a job, I don't want to keep volunteering I just want to use my skills and be part of a team.

When I got my role at Create New South Wales, I was really shocked and it took me a while to really enjoy the role and really push past that mindset of being grateful and it has made me reflect on the fact that for so many people living with disability, there is so much emphasis on just getting your foot in the door of employment but there is not a lot of talk once you have secured employment, what your career part is so that is something that I'm really passionate about at the moment and I try to work with Create New South Wales with creating opportunities for people with disability in the film industry because it is quite difficult in that industry.

I think for people with disabilities because there is quite a lot of barriers with networking and that sort of stuff and I also, another issue that I'm really passionate about, is the inclusion of children living with disabilities at school because I was often excluded from things, particularly in high school, like I was not allowed to go to school camp and when I was in year 11, some teachers called my mum into school and said, "We think that it is best that Johanna leaves school now, we don't think she will be able to complete year 12".

Luckily, my mum convinced them that no, she was going to stay because she always had high expectations of me and really valued education. That is also something I'm very passionate about and trying to remind myself to always have high expectations and to try and educate the community about that but by having high expectations of yourself, you are able to do all sorts of interesting things, including having opportunities in education because I think that really broadens your life experience. It certainly broadened mine and it has made me determined to build my own successful life and look beyond the current role I'm in.

And all sorts of things in a personal sense as well. Like building relationships, advocating for people, it has really made the passionate about social justice.


Thank you, Jo.

 Your mum sounds like a remarkable lady. Thank you so much. It is very important to hear those stories in a public forum. Thank you for sharing. I might offer up an opportunity to another amazing person who’s also volunteered today. Lia Sintras. Lia, if you wouldn't mind taking yourself off mute.

 A really inspiring young woman. Could you first give us a bit of an update, where are you at in your life? What are you up to in your life and work at the moment?

>> 00:14:47 LIA SINTRAS:

Hello everyone. My name is Lia and I'm 23. I've got cerebral palsy. I’ve been with CPA for 22 years, since I was very young. CPA has helped me so much in my life and I would not be where I am without it.

Basically, I wanted to start work when I was at school. This was a very challenging time for me because I was constantly having to show people what I can do and tell them that just because I have cerebral palsy doesn't mean that I cannot be in a mainstream school.

There's no reason why I can't be in a mainstream school. I just need extra support to make that happen. And because I went to a school that was established for quite a few years already, and the teachers were of an older generation, it was more difficult for them to accept ways of working and teaching. It was challenging in the way that they would look at me and be like, "She's in a wheelchair so she can physically, mentally do what everyone else can do".

 That was kind of the barrier to setting up work for me, going on trips and all of that stuff. Which was really frustrating at times because I could do so much but they did necessarily give me the time of day or the opportunity to show them what I could do without people judging me.

My primary school years were difficult. I would have carers coming in and out to help me with everything during the day. Everything was very tricky because when we were on different excursions, I couldn't necessarily physically do what everyone else can do so I was sitting in the background for quite a bit of that. Basically, the same in high school as well. It was just more of the same and I prove to people that I can do these things.

But when it comes to more physical stuff, obviously, I cannot participate like everyone else. But there are other ways of me participating but because they were not educated enough, and necessarily willing to accept that there are different ways of doing things and the times of changed and the need to adapt, it was difficult for me to speak up and I was young at the time to have found my voice and feel confident enough and willing enough to show them before they judged me on my disability.

It wasn't until I got to year 11 and 12 that I switched from mainstream to a Life skills program, which was basically everything to set you up for life, So basically looking at an invoice, learning how to pay that. Looking at how to use a credit card, learning how to pay those, basic maths, basic English.

 I actually had some really good teachers back then. I would still be on this program but they would integrate me into the class for different sections and it would be beneficial for me to be a part of. My favourite subjects back then were PE and drama, simply for the reason that I could talk about sport for hours on end. It was more than that. It was the teachers that I had that were willing to put in the time and the effort to get to know me before my disability.


Sounds like some common themes there. Really important. Allies around you. Those critical teachers that wrapped all of that support and positive encouragement around you and those foundational years. Similar themes there from Johanna. We got some wonderful support here in the chat.

 So good to hear people living with CP who have been to mainstream schools With the right support, they can. Lia, you have talked there about society and communities needing to adapt and get with the times. Do you want to offer up a few comments? I know that you have thought about this a lot. How could we improve? What can communities do to lift their game?

 >> 00:19:58 LIA SINTRAS:

This is a tough one for me to think about because I've got so many points that I could bring up in different ways. The main thing that I want to get people to try and understand is to get to know the person and the disability will come with that. But you can't get to know the disability unless you get to know the person because you can have the same disability, but they can be very different types.

If you look at cerebral palsy itself, there are so many different types that the person next to you might have the same disability but a completely different set of circumstances and the way that they live in the general life. Even though you might have the same disability, it is completely different.

Basically, the message they want to get out to people in my first point would be just treat people with disability exactly the same way that you would treat anyone else. Don't treat them any differently because some of the relationships that make people with disability can change other people's lives as well.


Thank you Lia. We take that to heart. And keep on your mission. Thank you so much, Jo and Lia. I might just take a slight left turn, and I have the pleasure of introducing you now to Rob White, CEO of Cerebral Palsy Alliance.

 Rob is a long-time ally for those living with CP and similar disabilities. You have just joined CPA, haven't you? You're new to CPA?

>> 00:21:44 ROB WHITE:

I love the way you say a left turn and then introduce me! It’s great seeing everyone on tonight and congratulations, It's obviously a huge success.

 There are people from Armadale, the UK, South Australia, Brisbane, Gold Coast, Melbourne, Perth, East Maitland even among the Sydney people, so a huge success. I have been around for a while. I've worked in the sector for quite a few years. My background isas a psychologist. I have worked in a range of areas within our organisation including rehab, employment, therapy services.

I've been in the management of the organisation for quite a few years. The key for me has been working with incredible families, incredible staff and incredible boards for those years. I've really seen the sector evolve and CPA evolve over those years.


Given that long history in the sector, Rob, you want to share with us what sort of changes and evolution you have noticed in your time in the sector?

>> 00:23:01 ROB WHITE:

It is absolutely extraordinary what’s happened in that period of time. It has really evolved. In the old days, most disability organisations were started by families and that was because there was no support for their kids and so organisations were built literally by families as was CPA in its day.

Over the years Government support started to come in slowly but it was very much a charity sort of model. We got some grants from the state or the federal government and we relied upon fundraising. There is always a short supply of services. It was really hand to mouth for years and it had to -- you had to beg for services. And the system was really under development. There was a lot of fragmentation. There was really no service guarantee to people whatsoever so what it meant, you get the best health services in Australia but we were really behind the rest of the world.

I think what happened in the early 2000’s is the people in the disability sector said enough. And they started to talk about this idea of the NDIS. That was something Gough Whitlam had spoke about. It was thought about in 2007 and launched in 2013 using the whole campaign similar to what we were trying to do tonight.

It was about the key issue and then that the issue was needing more services and more money. It started in 2013 and now we have 450,000 people in the NDIS.

The other thing that changed in that period of time, there's been a huge increase in world-class research and you will hear from Iona that we lead the world in that research space and it's been a huge increase in tech and the great increase in the tech available to people and again we want to accelerate that even more.

More importantly, you've heard tonight, is a huge increase in expectations by people. We are now expecting more and rightly so and that is so important for an inclusive life. Disability is talked about a lot more, it is in the public arena. It is not always great stories but at least is being talked about. That is important. If we are going to change the world, there is still a long way to go. We need people out there having that dialogue every day.


That is right. We know it is not perfect, the infamous NDIS. We will talk about that next. It was a world first scheme. In many ways, it is the envy of many countries around the world.

>> 00:25:56 ROB WHITE:

It is. It is the best scheme in the world and we should be proud of it and we have fought hard for it. It does have its issues but it is an extraordinary scheme where we’ve quarantined this money that can be used to provide services for people.


So, on that note, we might briefly pause. We are interested to hear from those on the call tonight that have had an experience with the NDIS. We acknowledge not everyone here with us tonight has. If you have, we will put up a snap survey and asked the following question – has the introduction of the NDIS made an impact for you?

Better off overall, worse off, or indifferent. If you have a moment, please go into the survey and provide us with some insight because we want to collate that throughout the call and there will be further surveys later in the conversation.

I will give you a few moments to submit your answer. While you do that, I'm interested to hear from Rob, given your longevity and legacy both now, before, and now during the NDIS, we hear so much about it and it is a hot topic in the press and on the political agenda but, Rob, what really is NDIS and what is happening at the moment? What are the major updates?

>> 00:27:37 ROB WHITE:

The key things happening, it is good and there is a lot of dialogue. We are 80% there as a sector. The last 20% will be really hard. It is hard thing to get right.

Over the last 7-8 years, we've been concentrating on getting people into the scheme and is 450,000 people in the scheme and 16,000 providers, extraordinary. There is money there for people to take and use it to buy services and that is the great thing about it. The key things that are happening in the sector at the moment, firstly, the Minister has just come on board, she is new.

That is a time for the government to reflect and to review what they are doing and to tweak the system to change what they are presently doing. That was the first thing. The first big thing she has done is to put a pause on independent assessments. Everyone has their views on that. We understand that there probably does have to be some kind of independent assessment done but we don't think having it done by someone who does not know anything about you and trying to get that done in under three hours and then write the report, is incredibly complex. We think there needs to be more work done.

I think one of the key things that people were concerned about with independent assessments as there are no appeal rights around them and so we are glad that has been paused and that there is time to look at that and review that and ensure that if you bring it in over time, it should be well piloted and have a lot of consultation with the whole sector.

The other thing, the third big issue, they are very worried about the scheme being sustainable and so there is this emphasis at the moment to drive down cost. I would be advising people to hang onto your package and advocate for your package. There will be this trend towards trying to bring the cost of the scheme down. In saying that, we understand the government must be responsible and must work within the funding framework that they have. That is one of the key things happening with this scheme and you will hear people talk about that publicly as well, keeping the scheme sustainable. We believe that there is a long way to go.


That is great. Very helpful. Thank you, Rob.

Let's wrap up the poll for a moment and if you have not got your answer in, thank you for engaging. The comments are coming through and your contributions are fabulous. Keep them coming. A lot of people are sharing insights from overseas and we have someone who would in future share stories from Turkey, the US, so what we would say is the more stories the better and they will be the opportunity to submit them in the future and we will provide a contact mechanism on the website that we will launch later in the conversation.

We cannot wait to hear more from you. At this point, before we thank Rob, I will invite the question to Rob, or two, on the NDIS. We have got one from Paul, who is a parent. He has a child with cerebral palsy. Would you like to ask Rob a question or two?

>> 00:31:22 PAUL MASI:

Sure Bronya, thank you. We have talked about the NDIS and is generally positive but what do you think would be the number one reform that you would like to see with the program now that would improve it?

>> 00:31:44 ROB WHITE:

Good question. Taking one thing, I would think that you're hearing from families that they have got a lot of pain points. There are great people working in the NDIS who want the scheme to work and the CEO at the moment is talking about the big emphasis is to get 450,000 people in and what they would like to do, other thing we would say, cut the red tape. A lot of red tape must be cut.

We have to make it easier to get into the scheme and to get the plan review and for people to use their package in a flexible way. That is what the scheme needs to work on in the coming year. It is important and when we go back to think about the vision for the scheme, someone was supposed to give entitlement to a package of funds to spend it the way that they want to, within reason.

Let's not make people go back every time they want to change a plan or spend it on something new. We must reduce the bureaucracy and those roadblocks and make it more streamlined for people. That is probably the issue I see the most from most service users.


Great. Thank you very much. Thank you, everybody.

So, another hot topic, aside from independent assessments, new ministers, the elephant in the room is COVID, the COVID vaccination program, and we fight a lot of questions on this. I have invited someone who talks about this every day and it is Elise Taylor who is CPA general manager of risk and strategy and she is the brains trust when it comes to where, how, what for the vaccination schedule.

Hello, Elise. Thank you for joining us. How important is it that people living with disabilities and their families get vaccinated for COVID?

>> 00:33:49 ELISE TAYLOR:

Thank you, and thank you for inviting me to speak. It's interesting to be introduced as the COVID lady and it's hard to imagine a life without COVID any more.

I guess, from our perspective as an organisation, we would say is very important for every Australian citizen to be healthy and well, and that includes strategies including vaccination. We are certainly encouraging all of our clients, their families, and of course all of our employees to have the vaccination when it becomes available to them.


Elise, would you like to talk about the current advice around how and where people with a disability and their families can get vaccinated? What are the steps?

>> 00:34:43 ELISE TAYLOR:

My advice, the advice keeps changing. One has to stay on top of this, as you can well imagine. The Health Department is certainly the best source of information and what we know is that there is a roll-out plan and it is phased based on different priority groups who I think are -- priority groups who are prioritised for the vaccination and people with a disability are among the highest priority groups to receive the vaccination.

Unfortunately, that first phase of the vaccination was disrupted with the Pfizer and AstraZeneca vaccines and some of the decisions made around the vaccinations that we can receive. We are certainly in touch with government quite regularly and we hope that that program and certainly the priority program for people with a disability will start to escalate and that is what we are hearing, that things will start to escalate now.

There are a couple of different ways to get the vaccination. There is a program specifically for people that live in residential supported group homes, which is slightly different to those who live in their own homes and communities. All of those details are on the government website. There is quite an easy way to check where you can get the vaccination in your local community but if anyone is unsure, I would recommend you speak to your GP because they will be the best source of information to help people to navigate their way and get the vaccination that is right for them.


Thank you, Elise. In the chat, we have included the direct link to the Health website page with information for COVID vaccinations for people living with disability so please visit that site for information. Thank you for that.

We have got live results coming in and 80% of you have said that due to the NDIS you are better off overall and that is good news. We also have got 2% who say they’re worse off, and 18% who are about the same. We’ve got some comments coming in. Lauren says I’m having to justify every Dollar I spend in my daughter’s package and that life is already hard as a parent of a two-year-old With CP and another disability and this adds pressure.

We hear the stories often and I am getting some other comments. NDIS has been life changing for my son and our whole family but it has been a fight for every dollar. For those of you with those stories, we will be leaning on you to hear more of those experiences because it is important when people like Rob and myself and others and you, as our allies, go to Canberra and talk about the improvements that we need to make backed by those stories and that makes our chances of seeing that change come to fruition even higher.

Thanks, everybody, for your honesty and sharing those stories. I have got the great pleasure of introducing another special person tonight and we are about to hear from Professor Iona Novak. Iona has been long involved in the sector and I will ask her in a moment to talk about how she landed where she is and what drives her.

She will not say this herself but Iona is the Chair of Allied Health and also the co-founder of the Cerebral Palsy Alliance Research Institute and is a two-time Fulbright scholar and has a long track record in a variety clinical trials with big data and neuroscience for CP.

We don't have time to go through a long list of achievements tonight, but, Iona, welcome to the call and thank you for sharing some of your time with us.

You have been involved in the sector for a long time. Can you tell us a little bit about your career and where it has led to?

>> 00:39:24 IONA NOVAK:

Thanks Bronya. I first met cerebral palsy when I was four years old Her name was Louisa and she was my best friend. We were hanging upside down on some monkey bars when I first noticed this foot brace she had on, which I now know is called a calliper. Louisa caught me staring at her foot and said I’ve got cerebral palsy. Get over it, let’s play!

When I look at Louise from this side of my career I’m touched that she invited me to play with her. She did not ask me to fix her cerebral palsy or to fix her spasticity, she invited me to play. My whole career has been dedicated to trying to understand the research goals of people with cerebral palsy, and to address that. So when we ask people with cerebral palsy what are their research goals when we opened the institute.

Number one was prevention – they didn’t want other families going through this. They secondly said, what are the optimal treatment for people living with the condition? And thirdly, could stem cells have a role in repair of the brain? I guess tonight I thought I might tell you a little bit about those goals.


We can’t wait, so I would compel everybody, if you could please stay on the line, we’re in for a treat, we have some music coming up after you know.

What are the highlights of the last 10 to 15 years of CP research?

>> 00:41:07 IONA NOVAK:

Our organisation was started by some families. They had a mantra that nothing is impossible. We try to carry this mantra into research. I don't know if they knew how brave it was at the time to say nothing is impossible. In my career, when I started, the textbook said that cerebral palsy was unpreventable, practically untreatable and definitely incurable.

We have worked really hard to see if we can address these challenges. With this mantra, nothing is impossible. I'm going to tell you the top five things that I think happened in the last 10 years towards meeting those goals of the families.

Undoubtedly, the biggest breakthrough is that the rate of cerebral palsy in Australia has fallen by 30% in the last 5 to 10 years with the Institute opening. You can see that corresponds by collaborating with people all over the world. That tells me that the textbooks were definitely wrong. Prevention is definitely partly possible. So in real life, this means 200 Australian families this year and every year don't have a child with cerebral palsy because of this collaboration between clinicians and researchers and people with cerebral palsy. If you think about a 30% reduction in the type of cancer, that would be extraordinary. It's even more extraordinary when we talk about a lifelong condition. How do we achieve this?

There was a few interventions that we have identified and we call them greenlight interventions. Two during pregnancy. The first one giving a drug called magnesium sulphate which you might know better as bath salts and given to the mum in a drip just before the delivery of a baby born too early or preterm. It can prevent as much as 30% of cerebral palsy.

Also giving a corticosteroid to protect the baby's lungs and its brain. There is obviously a strong connection between lungs, heart and brains so a steroid injection can help. Also for babies born in intensive care, if we know they're having a brain injury, to cool the whole body temperature down, what we call hypothermia, to interrupt the brain injury and that prevents cerebral palsy for 1 in 6.

And also caffeine, not just for parents but also for babies. It can also protect the brain from the injury. In addition to the rate coming down, there is this extraordinary trend that is happening in Australia and that is severity is also lessening. If you have a look at these two pie charts here, back in the 80s, about half the people with cerebral palsy could walk and half used the wheelchair and fast forward to now, and three quarters of people with cerebral palsy can walk and talk. What's really important about this as well is that they are even more likely to respond to intervention.

My friend Louisa, her goal was to play and we can talk about what sort of interventions might help her to do that. People told us that they wanted to know what were the best interventions, what were the optimal treatments. This is what we call a bubble chart. There are over 80 different interventions for people with cerebral palsy. Green means they work, red means they don't work and yellow is everything else. We now know that -- which treatments would help you reach your goals. This is important.

We also know now how much of these therapies you need. This can help inform people perhaps going to the NDIS or choosing from these plethora of treatments. Importantly, also, we have breakthrough around diagnosis. Historically, the diagnosis happened close to two years of age. That is because humans when they are born, cannot walk or talk. There was this wait and see approach. Let's see if the child can’t walk or talk and then we will decide if it is cerebral palsy.

But if we take that approach, we lose this magical window of brain development. We can see that only 21% of children in Australia get a diagnosis before the age of six months which is when the brain finishes connecting to the spinal-cord and is therefore the optimal window for conducting intervention. We wanted to see if we could change this. We managed to collaborate with people all over the world. To write a guideline about how to make an early diagnosis that was accurate under six months of age. That is the top -- number three breakthrough. We found that when you use a brain scan, an MRI, something called the general movement assessment, something called the Hammersmith, and you combine these three tests, all pointing to cerebral palsy, there is a 98% chance that the person in front of you has cerebral palsy.

That’s well before you can walk or talk. It gives us an idea of the right treatment at the right time for the right baby. The last important point here is that we have identified new causal pathways to cerebral palsy. One of them is genes. Up until recently, we knew that there was some genetic basis, about 1%. Now we know that it is as much as 30%. This is incredibly important for looking for new treatments. Maybe gene therapies in the future. If you have a look here, there is extraordinary overlap with cerebral palsy and autism spectrum disorder and intellectual disability and epilepsy. There are 10 genes that overlap between these conditions. This is very important information for us. When we think about new treatments. I think the future is very bright. When I look forward to what is coming, I think because people can respond even more to intervention now, we are looking at treatments that harness neuroplasticity, that help people with cerebral palsy achieve their goals, and full inclusion.

We have seen breakthroughs in technology and one is up here on screen and that is robotics. They can spend their energy on interacting with friends and the things that are most important to them. And also seeing excitingly fast forward the idea potentially of a prenatal diagnosis or a diagnosis right at birth using simple blood and urine markers, which would allow us to start treatment earlier during pregnancy and this may change the future as well. I think, in summary, we have made five major achievements against people's goals and I think the future is really bright.


Thank you. Thank you for your hope and determination and all the wonderful work you do. We always learn something when we hear from you. Lots of questions, queries and comments coming through here in response to your presentation. I would ask Iona, how can people get involved in this sort of research and the research agenda?

>> 00:48:28 IONA NOVAK:

There are many ways that you can get involved. You can see it on a website. I can think of two of the top of my head that might matter. There is a group called CP Quest which is people with cerebral palsy and families. They are consultants for research and that is a wonderful way to get involved so we can understand and learn from you because you can improve and refine research and then answer questions that matter to you.

People might also be interested in joining a clinical trial. So understanding how some of these cutting-edge treatments work. You can find out about them on our website.


Brilliant. We are posting those links in the chat window and there are some questions, some specific clinical and research questions coming up that I can see. Please, you are very welcome to forward those questions onto Research Institute at cerebral

 Please visit the link that we have provided There on further ways that you can be involved. Thank you so much, Iona, I cannot wait to hear from you in the near future. Next up, we have something really special. Hold onto your seats, it is time to dance if you will. I would like to introduce the Cooee Band and their friend and manager Marc Atkinson. We can see that they are looking fantastic in the frame. The Cooee Band has volunteered to do a performance for us and has been practising this in the last few days.

Before we kick it off, Mark, can you tell us a bit about the journey of the band and how it all came together?

>> 00:50:17 MARC ATKINSON:

Sure. It started with Stephen over here signing songs that he had heard on the radio and I said would you like me to bring my guitar in and he said yeah, and it kicked off from there.

 And people started saying, "Can I be part of it?" and it ended up being this! We've had activities curtailed by COVID. Previous to that, we were performing at music festivals and concerts, big concert halls like the Chatswood Concourse. We did a lot of busking.

Since COVID has come along, it has sort of put an end to that. So we are looking forward to this.


We are happy to bring the band out of COVID hibernation. Thank you so much. You've prepared something for us tonight. I was not allowed to know what the song was so will you, Mark, now give us a hint? Is there anything you want to say about the song?

>> 00:51:42 MARC ATKINSON:

We are going to acknowledge country. That will be our first part It’ll be a bit of a medley. We are going to treat you to the guy’s own lyrics. The guys express through a very popular song and if you know it, you can sing along to the chorus.

>> 00:52:18

 (Music plays)



We will sing with one voice. I am, you are, we are Australian.

We are one, but we are many.

And from all the lands on earth we come.

We share a dream, and sing with one voice.

I am, you are,

We are Australian.

I am, you are,

We are Australian.



Fantastic. Thank you so much. We like your version much better. Thank you, Cooee Band. We look forward to you composing our CPActive anthem for the future.

Thank you for putting a spring in our step and filling us with hope that drives us forward. To conclude the night, one more critical conversation. I'm joined by Hannah Diviney, who is an overachiever, to say the least. She is a university student, writer, more recently an advocate, and has an exciting campaign to share tonight and she lives in Sydney and she is deeply committed to improving the life and visibility of people in the community.

Thank you for joining us. Tell us a bit about yourself and what you are up to.

>> 00:58:45 HANNAH DIVINEY:

Hi, guys. It’s so nice to get to talk to you. First of all, how am I meant to follow that? The Cooee Band is great. Can we get them on television? I feel like that version of 'I am Australian’ needs to be heard everywhere.

I am a writer and disability advocate and the reason I am talking to all of you is because I have a campaign going at the moment where I’m petitioning Disney to create a disabled Disney Princess. There’s a petition and, as of yesterday, it hit 35,000 signatures from around the world, which is an absolutely mind blowing number because I did not think we would get anything more than 100.I thought it would mainly be people who knew me and supported me and maybe a few strangers but I have had people from all over the world and they have decided that this is something they are passionate about.

I think the link is being put in the chat as we speak for everyone to go and sign it, if you wouldn't mind.


We would be happy to and if anyone is a moment, please share the campaign. It’s so important. We support you and we cannot wait to see a Disney princess that reflects the amazing diversity of our planet and our community. Keep up the work.

Any final parting inspiring words?

>> 01:00:33 HANNAH DIVINEY:

I guess it was touched on earlier by Johanna and Lia. They said not to judge a person on their disability, that is the first thing, but also to those families who already know that and are living with it, I think we have to be able to imagine for ourselves success in various ways and we have to be able to not be afraid to push into areas where we have not been seen before and we have to be brave.

I know that there is a lot going on in everyone's live and I know that having CP is exhausting. I get it. I've been doing it for 21 years and I'm well versed in the exhaustion of being disabled.

I think if we can all band together or through communities like this one, and CPActive is a wonderful initiative, we can make some powerful change. We can make it so disability is not something to be afraid off and is not seen as something that is one-dimensional or is not defined necessarily in that physical achievement is the only definition of success.


Thank you, Hannah. Let's be brave together. Thanks, everybody, for your support for Hannah's campaign. We are running out of time. We have digested a lot tonight and we have traversed the NDIS, education, employment, the early years, neuroscience, and even heard the next rendition of Australia's new national anthem so we've covered a lot of territory and seen fantastic comments and ideas in the chat.

It is safe to say we have started off on the right foot. Before we wrap up, I will share some next steps. How can we take this forward together?

On the screen, I will share the launch of the new CPActive website. In a moment, you will see that the CPActive website is a place for the community and the place where you will see campaigns take their origin and when you scroll down, you can see that is where we are encouraging you to join so please sign up with your name and your email and we can share with you our plans and what we are campaigning for.

You will see ways that you can be involved and it is about events like this and we want to do more of these open them up to big audiences because we can fit a couple of thousand people in this Zoom room. The world is our oyster.

We want to open up to guests like politicians so that you have the opportunity to ask politicians and decision-makers the questions that resonate with you, and we want to invite special guests from the other side of the world who are advocating on key issues in those countries so we have learning experiences.

We want to provide you with, probably every other month, a newsletter of sorts where we can share updates, policy reform, campaign opportunities, research breakthroughs like those Iona mentioned tonight.

We will be sharing this with you on the chat and in a follow-up email so please take the time to sign up and become a member of CPActive. Someone said this week that they would like CPActive to be the Qantas Club for advocacy. That is the opportunity here.

We would love to see you with your friends, allies, supporters, companies, members of your community, neighbours, engaging in discussions like this in the future. That is what this is all about. Next time we come together, I will be sharing these exciting campaigns I have been alluding to and we have one hot on the heels that we want to take the government hopefully this year given it looks like we might have a federal election this year or early next year and it is a big vision to get early infant screening for all babies born in Australia implemented into the health system so that every baby born at three months can be screened for risk markers of Cerebral Palsy or similar conditions and we want to campaign unemployment and education issues.

Keep in mind that power is not always held by government and we want to work with private industry, local councils, communities, to make changes a reality. We cannot wait for you to come on the journey.

We want to be a movement and we want to be ambitious and we are all in this together. Thank you so much for spending this time on your Monday night to join us tonight. For more information, we will be sharing a link to the website so please visit that page and we have an 'contact us’ page for specific information for services and support.

We will post a hotline number and an email address and that is available Monday to Friday, 8am to 9pm. Thank you, everyone. We cannot wait to hear from you in the future and get CPActive.

Good evening and enjoy the rest of the week.

Two hugely influential members of the CPA family were recognised at CPA Allambie last week as they celebrated a combined 30 years of service.

Accenture is a long-term Corporate Partner of Cerebral Palsy Alliance. We interviewed Jasmina, an Analyst in the Accenture Melbourne office, to hear from her what it is like working at Accenture and how they support her in her role.