Great Minds Think Alike

"People do not follow titles, they follow courage. If you will just lead them onto the battlefield, they will follow you and so will I, unite us... unite the clans." - Braveheart


Despite 20 million people dying from ALS since 1869, there hasn't been any significant effort to treat or cure this disease. ALS patients everywhere are basically offered the same treatment options as Lou Gehrig in 1939. Without raising awareness and funding, ALS will not receive the research efforts necessary to find a cure and will continue to strike down every person who is diagnosed.


"Since 1869, twenty-plus million people have suffered and then died from ALS."

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Date: Mon Mar 3, 2008 11:13 am ((PST))



Good Morning,
I got this email from Lisa on Friday. I emailed her back, asking what
we as ALS advocates could do, because I like to present a positive with
a negative...I haven't heard back from her, but her weekends are usually
packed when she is home in Alaska. I'll try to get ahold of her this
week...it's all so very frustrating...
Jenny, CALS to Pat

On February 29 2008, LAM wrote:
I'm on my way to Anchorage for Idit-a-doggie weekend!

I had a long but unproductive conversation w/ coburn re als. He is
unconvinced, unmoved and unrelenting. We need to find a way to go around
him b/c I don't believe he will budge on his hold.

xxLisa



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Jenny,

Thanks. Your cousin is the best!

From your message I have two personal thoughts...

1. I wish more Senators were like Lisa.

2. I'm glad Coburn isn't my doctor.




/////////////////////////////////////////////////////////////////////////////////////// Date: Mon Mar 3, 2008 11:35 am ((PST))

I agree with you on both points!

~Jenny




Messages in this topic (22)
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Date: Mon Mar 3, 2008 1:21 pm ((PST))

Thanks Jenny,
The Coburn "Hold", there is more to this than we are being told. At
least there is a full time wife, mother, and caregiver, giving us the
latest news. I feel defeated on this important bill. I do enjoy your
journal and hope Pat is doing his best with the new device.




Messages in this topic (22)
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Date: Mon Mar 3, 2008 1:27 pm ((PST))

I see on Living with ALS that one PALS is wondering if 50 wheelchair
bound PALS outside Coburn's office during Advocacy Day would have any
effect. When I spoke with Pat Wildman about a more public face;
namely some kind of demonstration, he seemed to feel that it would
create more negative than positive reaction.

I am left wondering if some action is better than no action and
complete silence.

gamboachuck



Messages in this topic (22)
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Date: Mon Mar 3, 2008 1:27 pm ((PST))

I am wondering if he would reconsider if, on advocacy days he had fifty or so wheelchairs with pals outside his office.


Jennifer wrote: I agree with you on both points!

~Jenny





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Date: Mon Mar 3, 2008 2:18 pm ((PST))


...or do you suppose he would bill Medicare for seeing 50 sick people?




Messages in this topic (22)
//////////////////////////////////////////////////////////////////////////// Date: Mon Mar 3, 2008 3:34 pm ((PST))


I'm beginning to see some advocacy day possibilities ...

Hundreds of PALS dropping off tons of medical records to Coburn's office
so that he can "hold" on to them since we don't have a registry.

Hundreds of PALS wearing Coburn masks with signs that they're just dying
to see this doctor.

Inviting Coburn to a big event and everybody starts singing, "You've
Really Got A Hold On Me..."

A dozen or so PALS clogging up the men's rooms near Coburn's office so
that he'll just have to hold.

Just kidding.







Maybe.






Messages in this topic (22)
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Date: Mon Mar 3, 2008 3:50 pm ((PST))

HOW ABOUT AN ALS MEMORIAL WALL

.................................................. ..........................
I'm beginning to see some advocacy day possibilities ...

Hundreds of PALS dropping off tons of medical records to Coburn's office
so that he can "hold" on to them since we don't have a registry.

Hundreds of PALS wearing Coburn masks with signs that they're just dying
to see this doctor.

Inviting Coburn to a big event and everybody starts singing, "You've
Really Got A Hold On Me..."

A dozen or so PALS clogging up the men's rooms near Coburn's office so
that he'll just have to hold.

Just kidding.

Maybe.







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Date: Mon Mar 3, 2008 5:32 pm ((PST))




All these ideas sound great!

It is all just so very frustrating. I was involved in PTA for years,
and we were always struggling to find volunteers to help us do what
needed to be done...there were never enough people...now this situation
seems just the opposite, lots of volunteers willing to help, but no
direction being given, other than "sit tight, we are working on it".

I do know that every organization does have it's process. I also know,
and like Lisa mentioned in our video, things don't move very quickly in
the Senate. I am choosing to believe that the ALSA is working through
it's process, while trying to work with/through the Senate's process,
and everything is moving probably right on track...it's just for us, it
can't be fast enough because every minute, day, week and month that goes
by just makes the disease more of a reality, and a cure seem farther
away. For me, I guess some of the frustration lies lack of any new
info...I guess we trust in the process, and I will get ahold of Lisa to
see what her suggestions might be.

In the meantime, I'm writing letters to the 2 Wyoming US Senators. We
were in Wyoming last week to check out a college that our daughter is
thinking of attending. Neither Senator Enzi or Barasso is signed on as
a Co-Sponsor for S.1382...so I figured since I just dropped a bunch of
money in the great state of Wyoming, that entitles me to write the
Senators with my request!

I will definately keep you posted on what I hear...take care,

~Jenny, CALS to Pat




Messages in this topic (22)
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Date: Tue Mar 4, 2008 2:13 am ((PST))

Jenny,

You make a great point about "tuition rights" to have a say in a state.
Perhaps some others will see some states where they have a vested
interest and can spread their thoughts and influence.

Since political activism and interest seem to be making a comeback
among the young, tell your daughter that we're expecting much of her
regardless of where she goes to college!






Messages in this topic (22)
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Washington DC Photos http://www.adapt.org/photos.htm






Washington DC Photos April 2007

Washington DC Photos at the National Action September 2006
NASHVILLE TN Photos at the National Action March 2006

ADAPT's Photos at the National Action September 2005 Washington DC

Action - Seattle, WA, July 2004
Watch a video clip from Casaglozier Productions of
Pennsylvania's Governor Rendell meeting ADAPT in Seattle, WA

Photo Gallery ADAPT's Photos at the National Governor's Association Meeting Action February 2005 Washington DC

ADAPT Photos from Free Our People March ACTION September 2004 March to Washington DC

ADAPT Story and Photos Indiannapolis National Governors Association ACTION July 2003 DC

ADAPT Photos from ACTION May 2003 in Washington DC

ADAPT Photos from ACTION May 2002 in Washington DC

Photos of ADAPT's FALL ACTION OCTOBER 20 - 25, 2001

ADAPT Photos from ACTION May 2001

ADAPT Photos and Story of the May 12, 2001 Spring Arrival in Washington, DC

ADAPT Photos and Story of May 13, 2001, preparing to change the nations long-term care system in Washington, DC

ADAPT Photos and Story of May 14, 2001, The HHS and AHCA feel the power of ADAPT in Washington, DC

Rolling Freedom Express Photo Gallery

Photos of ADAPT Encountering Al Gore on the Campaign Trail

ADAPT Photos from ACTION June 2000
(Daily Action Reports)

ADAPT Photos from ACTION June 1999 and November 1999

I spent a good deal of time with the ALSA advocacy department
representative at a local conference yesterday and specifically asked
about the status of the registry legislation and, in particular, our
friend, Senator Coburn. Their experience with Coburn goes all the way
back to when he was in the House. He has been a maverick with more or
less the same objectives from his earliest days, in spite of being very
unpopular in wide circles, but popular amongst his constituency base.

ALSA met with him and his staff over the past two years specifically on
the registry and provided numerous briefings. The latest was prior the
HELP committee hearing where the bill was reported out by unanimous
consent with no amendment or objection by Senator Coburn. Then he gave
notice to the entire Senate that he would put a hold on at least 80
pieces of legislation that were intended to pass at the last hour by
unanimous consent, a procedure that that unless someone objects (C0burn)
the legislation passes without further action.

It does not appear that the Senator will deviate from his long policy
where he feels the government should not pass legislation on specific
diseases, or even health care at all and his strong objection to
anything that has the appearance of an earmark. (Which the registry
bill does not) and his long standing unhappiness with the CDC
management.

What happens next? The Senators can easily pass the legislation by the
normal process should it wish to, in spite of Coburn's solo objection,
but it will take longer. Even with a bill like ours with 70
co-sponsors, it is prudent to keep communicating with your Senators on
the importance of this legislation. ALSA intends to put out some
guidance on a campaign to pass the registry when Congress reconvenes.

I pointed out that one of my concerns was the complete lack of any word
on what was happening or going to happen since the hold was placed at
Christmas time, and especially since there had been such an overwhelming
support and participation by grass roots advocates. So my report above
may serve to catch everyone on this list up and just as important, the
need for timely communication to the advocates by the advocacy
department.

gamboachuck