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| Subject: Re: Research funding and political awareness | |
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Author: Leah |
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Date Posted: 21:01:19 09/11/03 Thu In reply to: Mark Dungan 's message, "Research funding and political awareness" on 05:10:16 09/11/03 Thu Alright Mark! I likve your thinking. One reason that I think having some sort of forum like this is so important is to make things easier for everyone involved, especially so things are not duplicated and all this energy is used efficiently and wisely. There are many, many foundations and such that raise funds, but many of them are related to a specific facility. I think these are HUGELY important and valuble. But there needs to be more. And we need to be the ones to do it. One of my personal favorites is CNCF. I really think that Pat has set this up to make miracles happen. The problem is, there needs to be the $ to make those miracles happen. I am open for anything...but let me share with you a snip from a recent e-mail from Pat to conference attendees: "Our main goal as a foundation is to fund research at institutions across the country that specialize in neuroblastoma. Our board has stipulated that after necessary expenses, such as printing, postage, etc that 70% goes to research and 30% for education and awareness. We are an all volunteer organization. There are no salaries paid out, benefits or rent to pay. Because so much time has been spent on putting together the conferences and newsletters, our research fundraising as been minor in comparison. But you can help by putting together a fundraising event for us. CNCF is a 501 (c)(3) nonprofit organization so donations are tax-deductible. We recognize all events in our newsletter. We can work with you on flyers, send you brochures or extra newsletters. We are completing a new brochure and that should be ready in about 3 to 4 weeks. Any fundraising event is very appreciative, $200 to $20,000. The event could be set up in your child's name if you like, such as the Mary Smith Fund, proceeds to benefit CNCF. You can designate the funds to be for research, education, awareness programs, the conference, whichever area is of most interest to you. Our medical advisory committee consists of Drs. John Maris, CHOP, Steve Grupp, CHOP, Pat Reynolds, CHLA and Sue Cohn, consultant, Children's Chicago. Many of you already have organizations that you like to work with or donate to. But if you don't and would like to work with us that would be great. Having been through it all with our son, Nick, we offer a unique and personal perspective that we can all relate to. I hope I am not being too presumptuous by even sending this email to all of you. We are here to help make your journey a little easier if we can in whatever way we can." Just some food for thought. Leah [ Next Thread | Previous Thread | Next Message | Previous Message ] |
| Subject | Author | Date |
| Re: Research funding and political awareness | Debbie Hume | 21:53:01 09/17/03 Wed |