Re: post about where we have been and where we are going

[Guest guest]

Sorry folks, I accidentally sent this to you. It's a

work in progress. Please ignore it.

Ellen

--- ellen lubarsky <ellenluba@...> wrote:

> I will send you more information as I get it. Our

> job

> right now is to organize our own ranks.

>

> One thing we could use is a better data base of

> patients , their friends and families who can be

> counted on to participate.

>

> If someone out there is really good with computers

> and

> can volunteer to work on keeping such a list, please

> email me. I warn you that if I am in charge of

> keeping lists, all will be lost - literally and

> figuratively.

>

> SUMMARY OF WHERE WE ARE GOING:

> Keeping what happened yesterday in perspective, I

> want

> to remind you all that the average time for a bill

> to

> become law in New York is 3-5 years. This year was

> the third year of the bill.

>

> Our fight has been going on for longer than those

> three years. We began with protests in an effort to

> get the attention of the media, then used the media

> coverage to give us credibility with the legislature

> -

> which had been treating us like nut cases before

> that.

>

> Patient lobbyists and calls and letters to the

> Assembly members, advocacy by Assemblymembers

> and Nettie Mayersohn meetings between Pat

>

> , Jill Auerbach and political leaders and lobbying

> by

> finally, finally, finally grudgingly

> won

> us hearings before the Assembly Health Committee in

> November 2001 and January 2002.

>

> This was a major turning point bringing previously

> Assembly Health Committee Chair, Gottfried,,

> on board as a major advocate for Lyme disease.

>

> In quick succession there followed a resolution by

> the

> Assembly (wording was very similar to the RI law

> that

> followed shortly afterwards) and a bill to Reform

> the

> OPMC. Parts of the bill had been changed since it

> was originally written in order to get it through

> the

> Senate - which was a particularly difficult feat.

>

> In 2003 Netie Mayersohn and also

> introduced a bill similar to the RI bill. The bill

> was unable to move because the legislature resists

> bills dealing with a single illness.. In 2004,

> Assemblyperson Adam Bradley came on board and he and

> Nettie reworked that bill to make it more likely to

> pass the legislature. The bill However, both have

> been actively involved

>

>

>

>

>

> =====

>

>

=====

[Guest guest]

Ellen,

The following are you listed as helping on this particular issue.

Is it possible for you to let us know which of these lists Lyme Aid members can

join for future information? Thanks.

Robynn

ChronicLyme/

lymenet_leaders/

NYLyme2/

LDANET/

[ ] post about where we have been and where we are going

I will send you more information as I get it. Our job

right now is to organize our own ranks.

One thing we could use is a better data base of

patients , their friends and families who can be

counted on to participate.

[Guest guest]

> Ellen,

>

> The following are you listed as helping on this

particular issue. Is it possible for you to let us know which of

these lists Lyme Aid members can join for future information?

Thanks.

>

> Robynn

>

GOOD IDEA, Robyn! Partisan members can receive information from one

source!