CF Awareness?

I often hear the line that Cystic Fibrosis is the largest, most common genetic disorder causing death among children and young adults across Canada and the United States. However people sit idly by while it happens. There does not seem to be the steam behind an aggressive Cystic Fibrosis Fundraiser. Once a year Cystic Fibrosis Canada (formerly: The Canadian Cystic Fibrosis Foundation, CCFF) holds an event at the Metropolitan Toronto Zoo, called "Great Strides" The event is always successful, however, I don't think it's enough.
I feel that there has to be some way to get CF on the map, and make people aware of the disease. If it was not for me speaking to my co workers about my brother Sean's condition and tribulations with CF, people I work with would have no idea what it is. I find myself day in and day out explaining to someone else what Cystic Fibrosis is. It's always the same questions too "Oh… How long has he had it?" People don't even realize that its a genetic disease and that you don't end up with it, you're born with it. I believe for something that is so common, that there should be more awareness, and more education.
I would like to see more fund raising events taking place over a larger geographical area. You always hear about charities for other illnesses, Cancer, Diabetes, Alzheimer's, Multiple Sclerosis, but only occasionally do you see an ad on Television for Cystic Fibrosis research, or events that are held to raise money. Every year there is a lot of publicity for Breast Cancer awareness and research. Walk a thins and rallies and the whole nine yards. When was the last time you saw an advertisement for "Great Strides" for CF? How many people know, that MAY is CYSTIC FIBROSIS MONTH? There has to be a way to spread the word.
I sent an email to Cystic Fibrosis Canada to ask for some advice or insight on how to start up a fund raising event in my area. I sent the e-mail a week ago and yet I am still waiting for some kind of response or acknowledgment. It's disappointing. I don't want to sit around anymore and feel helpless. I may not be the person with CF but it affects my life. It goes beyond my brother. I know what it's like to be close to someone with CF and to know the daily routine and the struggles. I know what the family members of other CF'ers are going through too. It's time everyone got involved and we take care of this. We need to end CF. Hopefully with modern day advances in medicine we can achieve the goal of finding a cure in my lifetime.
If anyone has any thoughts on how we can come together and work as a team to get an event in the Barrie Ontario area, I am open for suggestions.