Please send email to support Bill # S.1382

[indigosd]

Please go to this link Public Policy - The ALS Association and send the email to support this Bill. I have also posted the link on my facebook page and requested that Family and Friends become Advocates and send it on to their contacts. It has more impact if you add something personal-"My Husband has ALS..." etc. We have power in numbers:!:
If you haven't signed up to be an Advocate, please consider doing so.
indigosd

 

[indigosd]

hmmm....I wonder why there have been no replies? :[

 

[lynster]

This bill was passed last year and signed into law...

Lynster

 

[indigosd]

Lynster,
Action Alert

"Help Increase Funding for the National ALS Registry


Please contact your Senators during the month-long August recess and ask them to increase funding for the national ALS registry. Tell them to support health CURE reform so that we can find a treatment and cure for Lou Gehrig's Disease."

well....it appears to me that this is to increase the funding for the bill that was passed and it is on the front page of the Welcome to The ALS Association's
Advocacy Action Center under Legislative Alerts and Updates. If I am incorrect and it is not current, I sincerely apologize. Did you go to the link and read it. I sure would like to know if I am incorrect. :]

 

[tdamess]

done it was easy

 

[lynster]

Oops, I was incorrect (cannot even write the w-word!) Action alert it is.

I apologize for totally misreading your post.

Lynn

 

[indigosd]

It is fine! I thought maybe I was loooosssing it! :] We need to rally the troops and get behind this!

 

[CRF8]

advocacy

I just sent an email, took less than a minute for the generic one.

 

[asantiago]

I signed up. Thanks for the info.

 

[BethU]

MDA cuts ALS research and clinic funding

It is more important than ever to write your senators in support of this bill to increase funding for the ALS registry!

I just got a letter from Muscular Dystrophy Assoc. stating that they are cutting back on funding for both ALS clinics and ALS research. They are hit hard by the recession, and their fundraising last year and this is way short of its usual take.

MDA bills itself as the "world's largest funder of ALS research."

They've closed 18 offices, laid off 120 people, are asking staff to work a week without pay ... and cut ALS clinic funding by 10% and reduced research grants for 2nd and 3rd year research projects by 5%.

They say, however, they've maintained 2009 support for current research projects "for the remainder of this year." Like it or not, we are going to have to depend on the government to promote research. The registry will be a very quick, non-political and extremely useful tool for researchers.

If WE don't support it, who will?

PLEASE support the ALS registry and get this show on the road.

 

[asantiago]

Beth, I just posted it on my facebook page, lots of emails sent already

 

[peter57]

Hi
tried to add my suport but because i dont live in USA it wouldnt accept me.

This is important to support it as many other countries do not have the resources etc to carry on with extensive research into ALS.

So all you USA people come on and send an email.

As CRF8 said it only took a minute to do.

You will be helping not only your fellow country men (and women) but the whole MND community.

Cheers:smile:
Peter

 

[tdamess]

i am from usa and they took mine , wonder if they change polices again

 

[indigosd]

The "statistics" say that there are 35,000 PALS in the United States. That is simply a GUESStamite because there is NO ALS REGISTRY! If each one of us put forth the effort to advocate and asked our friends and family to ADVOCATE we would have a voice. WHY IS THERE NOT AN OVERWHELMING RESPONSE to this? It is sooooo incredibly essential for all of us. What are you waiting for and why? It is such a simple thing to do and takes no time or effort. Anyone remember the saying, "The squeaky wheel gets greased FIRST"! Oh, BethU-what to do?

 

[BethU]

indigosd ... it was brilliant of you to put the info on your facebook page. I'm struggling with FB and will get info up as soon as I figure out how.

We are SO CLOSE to having this registry up and running. I was reading the info on ALSA web and they have already done four pilot programs in four states to establish the protocol ... and they work! ... and they are set to utilize what government records exist, including VA, to get names and diagnosed. They figure using all the databases that exist, they can already account for maybe up to 90% of PALS in US.

When the program goes live, there will be a public portal for people to self-register ! No red tape, no big forms, no hassle ... you can do it yourself online.

They have worked out ways to eliminate duplications, etc., etc. I am sure for those who do not want to be "counted," there will be opt-out procedures, too, and ways to protect privacy.

I REALLY think this could be a key to finding our commonalities. And it is SO CLOSE! All it takes is getting the Senate to approve $7 million bucks.

Let's just keep rattling our cages and trying to get as many people on board as possible!