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Post by Tony Crispino on Oct 11, 2014 2:45:59 GMT -8
Good morning! Today I am in DC meeting with the nations top prostate cancer coalitions from each state. NASPCC or National Association of State Prostate Cancer Coalitions is a PC Roundtable membership that works on the political side of prostate cancer. This is my first gig here but I have met with many old friends. I'll post updates here on this thread to give a taste of how this organization works. Today is my first meeting with them so here goes... www.naspcc.orgMy first observation is telling. As an 8 year veteran of advanced prostate cancer I can still arrive at such an event as the youngest member. Lucky me... |
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Post by KC on Oct 17, 2014 9:45:22 GMT -8
Updates? Report?
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Post by Tony Crispino on Oct 17, 2014 17:06:45 GMT -8
Much of what this gig is about is in regards to state and federal interactions. We had a few presenters, one that I wrote about, and the others on 17 gene tests for PCa or about the recall of Xofigo.
Priorities were:
1. Making sure the support groups were letting the members know how to contact legislators.
2. Making sure key issues were distributed (I already spoke here about the key one right now on the 25% funding cut for the NCI)
3. Sharing any methods used by the state coalitions to get information out there. (Many will be joining us here and some already have this week)
4. Tom Kirk from UsTOO International also presented but I had to leave before he did.
Integrating this board into NASPCC was also discussed outside the Saturday session. There were several disparate boards these folks were using and I suggested that NASPCC use this one to keep things in common. That did not pass as any measure as yet but it was highly considered by a few board members.
Also I posted about Paul Schellhammer and his history of prostate cancer. We will have a presentation on this site from him. And it's a good one.
All in all it was a great session for me to meet in person some very well known advocates in person that all these years I've known on Facebook or other ways.
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twolf
Junior Member
Posts: 16 
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Post by twolf on Nov 2, 2014 16:39:45 GMT -8
I attended this meeting as well, and I had attended their meetings for the last 4 years.
The organization's main goal is the development of State Coalitions; at this time, there is a wide spread of priorities chosen by individual "State Organizations".
The group added public awareness and education as well as advocacy as core values.
In a work group with Merel Nissenberg (President) and Tom Kirk, ideas on implementing awareness and education programs were discussed; a closer networking with Us TOO was mentioned on several occasions.
In a separate session, Michael Siler (VP) presented issues with Government programs that require a strengthening of advocacy efforts.
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