Advocacy Toolkit

In a previous post, I presented an overview of the tools available on the Public Policy Page of the National ALSA website. This post is designed to make you more familiar with the options on the Elected Officials tab. Practice using the tools by sending a thank you letter to your State Legislators for their work to pass the CA State Income Tax Check-off and ALS Registry bills this year! Just give a brief overview of your story and why the passage of these bills is important to you. Helpful hint: It’s easy to compose a letter in your normal word processing program (i.e. Microsoft WORD) and then use the Copy/Paste function to add the text to the online/web form.

Step by Step

Before you start, you will need your Zip +4 code. Launch your web browser and access the Public Policy Advocacy Action Center using the link: http://capwiz.com/alsa/home

Click the Elected Officials tab.

Enter your Zip +4 Code in the search criteria boxes. Click the radio button marked STATE and click GO. The system will present a list of the elected officials who represent you.

Click the name link and the system will present an overview of the selected legislator with links to their official web page.

Click the View button located next to the Issues & Legislation section and the system will display a number of options, including a link to tips & protocol when writing to legislators.

Alternatively, you can also use the tools provided by the State of California to locate your local legislator. Click the link: http://www.leginfo.ca.gov/cgi-bin/memberinfo

Enter your zip +4 in the search box and click search. The system will provide a list of your State representatives.

Click the name link to be taken to the official web page for each legislator.

Click the Contact Me link.

Complete the information requested.

Click Submit.

Be informed – subscribe to e-news from your legislator. Learn about town hall meetings, new legislation, community events and more. Visit their website and sign up today.

NEW…VA Benefits Online Resource

Newly launched, ALSA National has created a new section on their website, targeted specifically to our military veterans and their surviving spouses. Designed to help veterans understand and apply for the benefits they are entitled to, the site includes important resources for vets with ALS, their families and survivors, such as answers to frequently asked questions about the new VA regulations for ALS and a link to our Roll Call of Veterans. Please share this information and encourage all vets to join the Roll Call of Veterans. Non-veterans also can become ALS Advocates via the site and receive the tools and information they need to help us fight for veterans and all people with ALS.

--Veterans Page: http://www.alsa.org/policy/veterans.cfm
--Benefit Information & Eligibility: http://www.alsa.org/policy/article.cfm?id=1358
--Applying for VA benefits: http://www.alsa.org/policy/article.cfm?id=1357

You’ve signed up to be an advocate…now what?!

You went to the Public Policy Advocacy Action Center –http://capwiz.com/alsa/home/ and registered with ALSA National to become an ALS Advocate. THANK YOU! You have taken the first step to making a difference for patients and families living with ALS. The next step is to get familiar with the Public Policy Page and some of the great tools available to us on the ALSA.org website. Here is a quick overview of the page – I’ll cover individual tools in future posts.

There is much more content, but this is the “meat” of the home page.

The Elected Officials tab allow you to find your elected officials, including members of Congress, governors, state legislators, local officials, and more. Enter your Zip +4 Code, select your search criteria and click GO.

The Issues & Legislation tab allows you to learn about key legislative priorities and send email messages to your legislators.

The Media Guide tab provides a comprehensive listing of the newspapers, TV stations, and other media organizations which cover your zip code.

The resulting media list allows you to send an email message directly to the key contact at up to 5 media organizations. This is just a partial listing for the 94547 (my hometown) zip code!

I’ve found the site to be very user friendly. So…logon and take a look around!

ADVOCACY 101

What is an advocate? (Webster’s) One that supports or promotes the interests of another

What is ALS Advocacy? The support and promotion of ALS related interests, more specifically research, health & long-term care and caregiver support, at all levels (National, State, Local) of elected government. ALSA advocates work to effectively lobby Congress, the White House, and related national organizations, as well as state and federal agencies for funding and support of programs which will benefit PALS and their families. The true strength of the advocacy network is the dedication of the many individuals affected in some way by ALS. Individuals who have made the decision to make a difference today, so that the future can be brighter for PALS and their families.

Why is it important? Joining together to raise our voices on behalf of PALS, we have been able to accomplish the following:

• Presumptive Disability (and accompanying benefits) for Veterans
• Passage of the ALS Registry Bill
• Passage of the 24-month Medicare waiver for ALS patients and the presumptive disability ruling from the Social Security Administration.
• Increased federal funding for ALS research at the NIH
• Federal funding for ALS research through the Department of Defense
  

Who can be an advocate? Anyone with a commitment to help current and future generations affected by this horrific disease. Anyone willing to raise their voice or write a letter to an elected official. Anyone willing to make a difference. You!

As an advocate, what do you do?
ADVOC[ATE*]

• Join in (or start !) a social networking discussion
• Join the “Advocates for ALS” group on Facebook
• Sign up: http://www.facebook.com/home.php?ref=home#/group.php?gid=46567667530&ref=ts
• Become a Greater Bay Area Chapter Facebook FAN
• Sign up: http://www.facebook.com/home.php#/pages/San-Francisco-CA/ALS-Association-Greater-Bay-Area-Chapter/7265231215?ref=ts
• Join the “ALS Association-Greater Bay Area Chapter” group on LinkedIn
• Sign up: http://www.linkedin.com/groups?gid=1723587
• Join the ALSA advocacy team.
• Sign up at http://capwiz.com/alsa/mlm/signup/

PARTICIP[ATE*]

• Sign up, lace up your sneakers and walk in a Walk to Defeat ALS.
  -Find a walk:

http://web.alsa.org/site/PageServer?pagename=WLK_BP_CA_eventlist
-Use the online tools to raise money for research and patient programs. It’s easy and fun!

Sign up, don your padded shorts and ride your bike to Defeat ALS.
-Pick your ride: http://www.ridetodefeatals.com/Pick_your_ride.html
-Use the online tools to raise money for research and patient programs.

Sign up and volunteer for one of the many chapter events/projects.
-Register today: http://webba.alsa.org/site/PageServer?pagename=BA_volunteer
-There are LOTS of opportunities! We can find a job to suit your skills and time commitment.

EDUC[ATE*]

• Learn the answers to FAQs
  -Wikipedia:

http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis
-ALSA: http://www.alsa.org/als/what.cfm?CFID=3127178&CFTOKEN=6299aa0f7dad5592-E96C37F7-188B-2E62-80C54B5B86E267D5
-Whatisals.com: http://www.whatisals.com/

Speak up and speak out.
-Educate your friends, family, co-workers, everyone in your personal community. Get them involved!

POPUL[ATE*]

• Update your social networking sites (i.e. Facebook, LinkedIn, Twitter) on a regular basis.
  -Share links to research, interviews, stories, events, clinical trials
  -Post encouraging messages
• Promote local events to raise ALS awareness by participating and sending event invites to your friends.

[*ATE] – ALS…Together it Ends

Kids and ALS

I think sometimes we work too hard to shield children from the difficult circumstances of life. I don't personally think it's right to frighten children by initiating conversations they aren't curious about, or overwhelming them with so much information they are in tears of confusion. But I think we do them a disservice when we hide or whitewash the natural order of life.

During Bill's illness, the children in our neighborhood ranged in age from 3 to 18 with the majority falling between 8 and 13. Initially I was pretty nervous about answering the question "what's wrong with Mr. Bill?" Bill, God bless him, set me straight. "It's just like talking to adults, only just a little different. You need to listen more carefully, answer only the question they ask and use simple words". OK....great! As usual, he was right! Here's an example:

• Q: Why is Mr. Bill in a wheelchair? A: His legs don't work so well anymore.


• Q: Why? A: Because his brain can't talk to his legs to make them move.


• Q: Does it hurt? A: Nope!


• Q: Will he get better/walk again? A: No


• Oh.


• Q: Can I look at the laptop? A: Sure!


• Q: What's he saying? A: Why don't you ask him. He can hear/understand you and he'll answer any question you ask!


• OK!

Bill's laptop or "talkie" as we came to call it, was an endless source of fascination and information for the neighbor kids and their parents. In my experience, kids understand a lot more than we give them credit for and are very quick to adapt to changing circumstances, generally without intervention from adults! The kids naturally adjusted to the wheelchair and to Bill's funny, computer generated voice. It was the most natural thing in the world after we explained the basics. I will always be grateful to whatisals.com for the kid-friendly explanation posted on their website.

The kids figured out a rotating schedule among themselves to help me walk the dogs. Sometimes they would invite Bill to "walk" with them so they could ask their questions, knowing that Bill would answer honestly. I would often hear laughter, because that was his style and because a computerized voice is naturally funny!

Sometimes we would lose track of time and we'd have parents knocking on our door to collect their kids for the evening. In the early days, they would be aghast at the questions asked (you know how direct children can be!) and try to "shush" the kids. Bill would quickly re-assure the children that he would answer the question, inform the parents that there were no issues and then set about to patiently and carefully answer all of their questions. He always answered honestly and in an age-appropriate manner. It was truly a wonder to watch.

One of my fondest memories is the day he actually died. It had been a full day and I had dinner with friends in Orinda. I came home and parked the van in the driveway. Most of the kids were out playing, enjoying the freedom of late night play that only comes in August when there is no school. They all ran to the driveway and when the ramp didn't drop, the older kids instinctively knew he was gone. Zack...a lively and curious 6 year old asked the question on everyone's lips...
Z: "Hey....where's Mr. Bill?"
K: "Well Zack, Mr. Bill is in heaven." (I knew I had a choice to tell the truth or paint a story. I chose the truth and will always be glad I did.)
Z: "Heaven....all dogs go to heaven" (long pause as he looked around at the older kids starting to tear up) "That was a really sad movie"
K: "Zack...you are so right!"
Other kids: "Mrs. L., can we come in?"
K: "Sure, but you need to tell your folks where you are"

And that was that. About 10 minutes later, many of the neighbors came back to the house with their children to pay their respects and ease into their grief by reminiscing. As Zack's older sister Michaela came into the house, she spotted Bill's empty wheelchair, and without any hesitation, went to the chair and said her goodbyes to Bill by gently kissing the small bunch of silk daffodils anchored to the back. I'm sure she had no idea I was an observer to this fleeting, selfless, authentic gesture, but I will always remember her gentle manner and my gut reaction of "kids "get it" if we just give them a chance!"