Saturday, June 27, 2009

ALS Advocacy - Call To Action

An Important Request from the ALS Association, Jim "Catfish" Hunter Chapter
**ALS ADVOCACY - CALL TO ACTION**
Dear Friends,
As you may recall, we sent out an email two weeks ago asking you to call your Representative and Senator to ask them to reinstate the $400,000 annual funding that was cut from the House version of the state budget. We had an outpouring of support and the Chair of the Health and Human Services (HHS) Committee presented an amendment to reinstate a portion of the funding in the final version of the House budget. Unfortunately the House defeated the measure but this tells us that our collective outreach was heard by one of the most important members of the House HHS committee!

WHAT NEXT?
Now the details of the budget are being worked out in a special conference committee made up of appointed members of the Senate and the House. We have an opportunity to be reinstated if we can convince them that this is important enough.

We need you to call or email the Representatives and Senators listed below to let them know that if they do not fully reinstate this funding ($400,000 recurring), it will be devastating for people with ALS and their families inNorth Carolina. The ALS Association would be forced to cut vital programs and services including ALS clinic funding. North Carolina would, in a sense, be abandoning and turning its back on what many people believe to be its most vulnerable citizens. We need these calls to be made or emails to be sent as early in the week as possible.

I have listed the contact information below for the people who will be deciding the HHS budget. I have also included a sample phone script. Please take the time now to call or email each person listed below.

You should know that since the NC General Assembly approved the $400,000 recurring grant in 2005, many wonderful things have happened for people suffering with Lou Gehrig’s disease in NC. I have highlighted a few of these advancements below:

Number of PALS receiving services:
In 2005: 150
In 2008: 300 +(There are thought to be 700-900 patients in NC)

Support Groups:
In 2005: 9
In 2008: 13
(Located throughout NC)

Medical Equipment Closets
In 2005: 1
In 2008: 4
(Located throughout NC)

Care Services Staff
In 2005: 2
In 2008: 4
(Helps PALS secure services, provide counseling services and training for families, hospices, nursing facilities and hospitals to provide better care for people with ALS.)

Patient Support Grants:
In 2005: $31,000
In 2008: $201,000
(This increase includes assistance for in-home care, transportaion services and assistive technology equipment).

ALS Clinic Support:
In 2005: $65,000
In 2008: $247,000
(We added a new clinic in eastern NC and greatly incrased funcing to others)


Senate HHS Appointees
1. Sen. Doug Berger; (919) 715-8363, Doug.Berger@ncleg.net
2. Sen. William R. Purcell; (919) 733-5953,William.Purcell@ncleg.net
3. Sen. Martin L. Nesbitt, Jr.; (919) 715-3001,Martin.Nesbitt@ncleg.net
House HHS Appointees
1. Rep. Beverly Earle; 919-715-2530, Beverly.Earle@ncleg.net
2. Rep. Dr. Bob England; 919-733-5749, Bob.England@ncleg.net
3. Rep. Verla Insko; 919-733-7208, Verla.Insko@ncleg.net(PLEASE THANK HER FOR LEADING THE HOUSE EFFORT TO REINSTATE OUR FUNDING)
4. Rep. Jeff Barnhart; 919-715-2009, Jeff.Barnhart@ncleg.net
5. Rep. Jean Farmer-Butterfield; 919-733-5898, Jean.Farmer-Butterfield@ncleg.net
6. Rep. William D. Brisson; 919-733-5772;William.Brisson@ncleg.net
7. Rep. Randy Stewart; 252-443-6923; Randy.Stewart@ncleg.net
8. Rep. Jennifer Weiss; 919-715-3010; Jennifer.Weiss@ncleg.net
If they cannot work out their differences in committee then it will go to:
1. Speaker of the House; Joe Hackney; 919-733-3451,Joe.Hackney@ncleg.net
2. President Pro-Tempore of the Senate; Marc Basnight, (919) 733-6854,Marc.Basnight@ncleg.net

SAMPLE PHONE SCRIPT:
Representative/Senator __________, My name is ________________ and I want to talk to you about the $400,000 annual funding that is in jeopardy of being cut for people with ALS.

This is such a small amount in the HHS budget but it represents a very large part of the ALS Association’s budget. Elimination of this funding would sever a lifeline for North Carolina’s most vulnerable citizens.

If you do not know what ALS is, many consider it to be the world’s worst disease. (BRIEFLY SHARE YOUR CONNECTION).

Please, do whatever you can to protect the entire $400,000 appropriation. Eliminating any part of it would be too much. If you cut this funding from the budget, the ALS Association will have no choice but to significantly cut programs like respite care, transportation assistance, assistive technology access and worst of all, ALS clinics. This would be devastating to the many people who count on these critical services. I know you have to cut somewhere but please do not take away these services for people with ALS when they are already dealing with the biggest crisis of their life.

Thank you for your time and more importantly your support!