I am a parent of a child with CF and I want to heighten the awareness of CF within the community, politicians and some medical people. When it comes to fundraising and getting outsiders to attend events, CF is lagging behind compared to Cancer, Juvenile Diabetes etc. Can anyone offer me advise on the best way to go about it and in particular what to share with others. Are they really interested. If not, how do we get them to be.ThanksNT
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Awareness
- Thread starter anonymous
- Start date
My wife and I have been active in fundraising since our son was diagnosed over 4 years ago. We started really grass roots with letter writing campaigns around the Great Strides walk. I have also put on a golf tournament - this will be the 4th year and we expect to raise $20,000. Remember that this is all grass roots money - very little corporate sponsorship.I feel that by doing these things and explaining how the money is spent by the CF Foundation it raises awareness and also helps raise more money. Our son was diagnosed in April of 1999 and since then we have raised about $50,000 from individuals.Because CF is a relatively small disease it is hard to raise the kind of money cancer and diabetes raises but we can use that to our advantage. Since CF is considered an orphan disease the drug companies can't get a return on their money by investing in CF related monies that is why the CF Foundation is so important to disperse the $$ correctly. I completely understand that the drug companies are for profit and they have to meet their sharholders expectations but you can use the orphan disease argument to help you position the CF Foundation as a better place to give money.
You could join the National Cystic Fibrosis Awareness Committee. Since the CFF is not really into raising awareness the NCFAC was formed to fill the void. I went on a local cable news show to raise awarenss in my area as a member of the NCFAC. I also send all press releases to my local TV stations when there is some kind of CF event. This month is National Cystic Fibrosis Awareness Month in the US., thanks to the NCFAC who did all the work for it. The CFF did finally jump on the bandwagon at the end there.Andreago to www.cfawareness.org