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| Subject: Re: Why give for neuroblastoma? | |
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Author: Pat |
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Date Posted: 19:36:27 09/23/03 Tue In reply to: Mark Dungan 's message, "Why give for neuroblastoma?" on 06:44:01 09/18/03 Thu >I am trying to identify a message, mantra, or story >that has national appeal that can answer this >question. I know it sounds silly to us. But if you >weren't afflicted by this nasty disease why would you >support the research effort. What would make any >different than any of the other hundreds of causes >that are out there. Is it because: >1. it is grossly underfunded by comparison? >2. the mortality reates are so high? >3. it primarily afflicts the youngest of children? >I don't think that is enough to convince the world of >our need. What ideas do you have? What would make it >important to you or anyone else for that matter? Why >are we different? What is our story and why are we >more deserving? Your feedback is greatly appreciated. >Thanks, >Mark Mark, I think one of the tricks to this is first on the basis of awareness, children's cancer in general. And on a national level, not just our individual situations. I am not knocking in any way the individual efforts that are out there. They need to be there in some fashion. But it tends to only affect a certain town, or a certain city or group of people. Look at what St. Jude's does. They collect tens of millions of dollars for their efforts. And all of the money stays there. Have they found the cure for neuroblastoma? Leukemia? Ewings sarcoma? How many of your doctors have come from St. Judes? I know at Children's in Chicago, we've had a few of them. Doctors come and go from institution to institution. So I personally don't believe that 1 hospital or researcher or scientist holds all the answers. They all, collectively and separately have different minds, different forms of research that are beneficial to the whole NB community. We have chosen at CNCF to have them come to us through grant applications to request funding. This will be up on our website at a later date. I am not a doctor that is why I have the panel of NB researchers to work with that will review and advise what is the most promising avenue(s) to follow. It has to be sound research that will benefit the children as quickly as possible. Quickly in NB terms may be years, but hopefully with some luck and a lot of funding we can move the process along a little faster. We are trying to reach out to the families to work with us and do a fundraiser in their child's name with CNCF as the beneficiary. By pooling our efforts and becoming more united as 1 group, we have a stronger voice. It is difficult to go out to a major corporation and ask for sponsorship if we, our name isn't known. We have to become known. We have to show we are making a difference. The Susan G. Komen foundation had a lot of resources behind them when they set out on their journey. Their family has a lot of money behind them. Look at the impact they have made. If you have money people listen. If you have unity, you have a voice and you will be counted. We would like to start up a parents executive committee within CNCF to help us accomplish this. We need active and committed parents that are willing to put in the time and effort to make a difference. We need to brainstorm, like on this type of forum, come up with a plan and a set of goals and start to delegate the roles each one will play. We need to do it nationally. Pat [ Next Thread | Previous Thread | Next Message | Previous Message ] |