[nfb-talk] interested in retinoblastoma

[Powers, Terry (NIH/OD/DEAS) [E]]

Start an e-mail list.  Find your members.  Get to know each other and
create your agreement you need.  Who knows, you might be happy enough
just chatting over the e-mail and meeting at National convention.  The
crafters devision is in the middle of being established.  I am a part of
it and on the  board, I guess you would call it, or its founding team.

Terry Powers
Write me or David Andrews if you would like to Join.  All crafts and
painting are welcome.



-----Original Message-----
From: T. Joseph Carter [mailto:tjosephcarter at gmail.com] 
Sent: Thursday, March 06, 2008 1:22 AM
To: NFB Talk Mailing List
Subject: Re: [nfb-talk] interested in retinoblastoma

What's wrong with an official group?  We have blind diabetics, blind
students, blind lawyers, guide dog users, seniors and other special
interest groups within the Federation.  What's one more, aside from yet
another mailing list for David to have to remember to send announcements
to.  *grin, duck, run*

Joseph

On Wed, Mar 05, 2008 at 08:00:13PM -0700, Alicia Richards wrote:
> Hi, everyone.  Mark, it is very interesting that you bring this topic 
> up.  I too am a retinoblastoma survivor of 27 years, and have been 
> unsettled by the recent reports of deaths I've been hearing due to 
> returning cancer.  If you wish to email me privately and talk more 
> about this, I would welcome it, as I too have been feeling the need to
reach out to other survivors.
> 
> At this time, there is no group within NFB for those who have survived

> or have been effected by retinoblastoma.  I looked into starting one a

> few years ago, and was shot down, to put it mildly.  I figured that 
> since I could not start any kind of official group, if anyone wished 
> to start an unofficial one, I would be willing to do so.  As I said, 
> feel free to email me off list if you'd like, and we can discuss this
further.
> 
> Alicia
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