Friday, 26 February 2016

Cystic fibrosis community. Where it all began.

As many of you know who were involved in the rollercoaster ride campaigning for Kalydeco. I'm Jane O'Brien's brother Mark. I enjoyed the campaign involvement immensely. It gave me an insight into your community that most unafflicted with cystic fibrosis get to see. You have a wonderful spirit in times of need. My involvement in the campaign took me places I'd never thought of. It showed me angles and arguments I hadn't thought of. It taught me how difficult it is to be heard.I'm 50 years of age and I want to make a difference. Not solely to the cystic fibrosis community. To the human aspect, that seems to be neglected in Australian politics. I am running for The Senate Election 2016 from Victoria.
I believe with the support of communities I've been involved in via my autistic son Dylan's journey. I may muster enough support to give minorities a strong voice in and out of parliament.I have been working very hard over the past year to build an audience on social media. Predominantly via a blog site that has had over 150,000 visits. and by actively campaigning on twitter.
I don't want to be just another politician. I want to be accessible. Particularly to cystic fibrosis families whenever needed. I intend to remain interactive on my twitter site. How will this help the community? I envisage there will be other medications to lobby for. Like Orkambi now. I think having a voice inside parliament highlighting delays and other issues could be of real benefit. I also think it would give me access to more information and may expose ways these things can be sped up. I think it would give me access to pharmaceutical companies key stakeholders in these issues. I am sure it will not in any way harm the chances of this communities concerns being heard.
I am not doing any paid advertising in my campaign. I am going to do crowd funding  purely for the purpose of charitable donations. For example, My sister Jane has an interest in a possible trial that may be constructive for cystic fibrosis & related conditions. Perhaps we could donate to a University in Melbourne to get this happening?
Other areas of interest for me are aged care, mental health, drug rehabilitation, disabilities, domestic violence, homelessness health care to name a few.
I don't know how successful crowd funding will be but there's only one way to find out.