Damien Cook wrote this piece for our Members about his special relationship with FAST, how he organised to create an unforgettable experience for sufferers of the disorder at our Raiders match and Iosia Soliola's contribution in the lead up.
Members received this content last week in our Member Zone.
At the start of this year I had some goals, obviously some footy goals, and as an ambassador I had some stuff that I wanted to get done for FAST (Foundation for Angelman Syndrome Therapeutics Australia) as well and one of the ideas was a game day.
So I spoke to the people at Souths and Souths Cares, and the people like Katie (Events Manager Katie Staniforth) that look after game day helped me out to put a game plan together to make the day happen.
I initially spoke to Frank Caracoglia, whose son Jacob suffers from Angelman Syndrome, about ideas and we put some ideas together about what we can do around that actual day.
Then we took those ideas to Souths and they helped with what we can do and some of their own ideas. Obviously they’re a lot more experienced in that regard.
But it was a few months of brainstorming and when we brought Souths in to do the actual plan for it they got it happening really quickly and got it all sorted in a couple of weeks leading up to game day.
Firstly I wanted to see if we could do a FAST Cup because FAST is the Foundation’s nickname, but there’s a fair few of those cups going around so we thought it would be more unique to have a day where we had some fundraising, got a great story on the Footy Show as well and got some great donations from that, and I thought it was a good idea to recognise the Foundation and those organisations that support it with donations as well by presenting the donation cheques to FAST on field at the game.
A few months ago when we were putting the plan together and I told him about the day he thought it was a great idea and he said he’ll do everything possible to make sure that we can get it happening as well on his end. When we came up with the ideas I said it would be good to get Jacob to run out with us and for someone like Jacob who will probably never play in a team sport, he watches his brothers do it, he got to run out there onto ANZ Stadium with us, I know how he happy he was.
I could tell how proud Frank was when I met him with Jacob out on the field. Running out onto the field with Jacob was very special not only for him but also for me. Frank and his family are big Souths fans so to have little Jacob in the tunnel was special.
It was a bit difficult at the start because his carer took his Skittles off of him and he lost it a little bit but once we gave them back to him he was more than happy to run out with us. He had a big smile on his face the whole way out and seeing Frank there at the end, how proud he was and how happy he was, it’s these little things that we can do in the position we’re in to make a massive difference to those people.
There were a lot of emotions going around. To be honest I tried to get a lot of it sorted out and planned during the week because I was starting after a few weeks of not starting. I had to concentrate on that so I was lucky enough to have all of the plans put in place.
It was a good feeling to know the day was actually happening. It was a very proud day, knowing what we had managed to get to happen as well. But I guess I didn’t really notice much until I actually met Jacob in the tunnel. It hit me then when I was running out with him about what sort of day we had put together with the help of everyone involved and it was a very special moment.
My game day routine, well we’ve got a bit of a breakfast club with Kyle Turner and Alex Johnston every morning. We take turns shouting and because Alex is on so much more money than us he takes us to more expensive places! We generally meet up somewhere in the Shire, try a different café.
Then I go home and relax a bit, have a bit of a stretch and play some PlayStation.
On the longer days where we have an 8pm game I’ll fit in a bit of a nap around lunch time as well. Then I head into the game.
The night before is always spaghetti bolognese and some sort of funny movie.
It was very unlucky that Sia (Raiders player and FAST Ambassador Sia Soliola) got suspended because he’s a gentle giant and the stuff he’s done for Angelman Syndrome has been fantastic for a long time.
When he was over in England there was a special girl over there that he had a connection with and he became good friends of the family as well while he was over there and brought that back over here.
He got involved with FAST and he’s been very supportive every week. He took on writing the names on the wrist as well and in speaking to him, he knew he was missing five games, but he was most disappointed about missing that round because everything I asked of him around ideas and stuff like that, he was more than supportive and willing to help out wherever he could.
Presenting the cheques to FAST was a good finish to the day, recognising those people who had made donations and everyone in the crowd as well who had donated on the day.
It was a good stepping stone on how that day’s going to be in years to come as well. That’s set a minimum standard now and we’re going to try and build on that each year, keep creating that awareness for Angelman Syndrome and hopefully keep raising much needed funds.
We’re very close to treatments and to finding a cure which is definitely a possibility.