Tuesday, May 26, 2009

Truly Living, an essay by Julia Miller

Angels are delivered to us every day. Sometimes we know...and sometimes we don't. We were fortunate to receive help from EXTRA HANDS FOR ALS, founded by ALS patient Jack Orchard and his wife. Matt Nevitt and Julia Miller were the students who came every Monday for about 6 months to be with Bill and me, to help out and be our "extra hands". I will always be grateful to, and hold a special place in my heart, for both of these sefless young adults. Today, I share the essay that Julia wrote about her experience. Enjoy!

Truly Living

When I first signed up for Extra Hands for ALS, I thought it would be a nice way to spend free time, volunteering with real people and trying to make the world just a little better. I had no idea that the day I walked into 1847 Linwood Drive would forever change me. Extra Hands for ALS is a program throu
gh which patients with Amyotrophic Lateral Sclerosis (“ALS”) are connected with volunteers who help them accomplish things they no longer have the ability to do on their own. ALS (commonly known as “Lou Gehrig’s Disease”) is a heartbreaking and debilitating disease that slowly deteriorates a person’s motor functions yet leaves the brain untouched, in effect holding them prisoner in their degenerating body until they die. ALS is a terrible disease, both for those who have it and for those who must watch their loved one slowly die in front of them. Yet to die from ALS is relatively easy compared to living with it. It requires an amazing strength and bravery, and an acceptance that our time alive on Earth is not guaranteed. Although he knew that this disease was terrible in every way, my patient Bill Lichtig lived with it with an uncanny dignity and was able to indirectly use the disease to teach me amazing life lessons. And he has changed me forever.

The day I met him, Bill wore glasses, had a cane resting against his knee and two golden retrievers lying at his feet. He stood up to shake my hand in greeting although I could see it pained him to do so. This was my first glimpse of what I learned was his steadfast resolve to live despite his disease, an amazing bravery I hope to one day see in myself. Bill has left me, but he leaves me with resonating lessons about three things: love, life and laughter.

Bill was a lover, of people, of life, and of laughter. You cannot just teach someone about love, but you can show them. Bill showed me that you must let people love you, even when you do not want to. Bill’s wife, Kathie, was his primary caregiver. This meant that she was in charge of feeding him, among other things. Seeing Kathie fearlessly feed Bill through his feeding tube truly showed me love. She chatted with him about unimportant things while she did it, I guess in an attempt to show him it was not a big deal to her. Yet through that action I could feel the outpouring of true, deep love they felt for each other. Kathie could have had a nurse take care of Bill, but she did not; Bill could have told her he wanted a nurse so as to not inconvenience her, but he did not. Bill allowed Kathie to care for him because he loved her, and Kathie never stopped nursing Bill because she loves him. There is a song by a band I like, Death Cab for Cutie, who sings a song with the lyric: “Love is watching someone die.” When I first heard those words I instantly thought of Bill and Kathie, who have taught me more about love than I may ever learn the rest of my life.
Besides love, Bill also taught me about life. One day, before he could no longer comfortably chew them, Bill was enjoying his daily snack of Oreo cookies and he said to me: “Cookies fix anything.” While unfortunately cookies could not physically cure Bill, they symbolized a deeper meaning. Cookies were all the small things Bill did to enrich the last part of his life. Sitting outside in the sun, petting the dogs, even sniffing the air in the kitchen as I attempted yet another meal under his instruction. Bill showed me that focusing on small, positive things can help you ignore large negative ones—or at least keep them from ruining your day.

One day Bill, who liked to speed in his motorized chair, was enjoying wine through his feeding tube. He told me if a cop pulled him over he was fine because he could truthfully say: “Officer, no alcohol has touched my lips.” I know his mischievous humor kept him alive when he no longer had the physical strength. This alone proved to me the importance of laughter, and he made me laugh constantly. Once he could no longer speak himself, he used a computerized voice, although typing was tedious and frustrating for him. He maintained his dignity, even when others wer
e not so understanding. For example, he was sometimes mistaken for a prank caller when using the telephone, but his strength to even recount these stories to me displayed an undaunted will to fight his disease. A coward would be embarrassed by such an event, but not Bill—by reliving the experience he was showing everyone he was still here, and still strong.

The most important lesson I learned from Bill came when he told me: “Yes, this isn’t an easy disease to live with. But there’s nothing I can do about it. I can either spend my days crying or laughing—and I choose to laugh.” This statement concisely sums up what I learned from Bill. I learned not to let small things, like forgetting an item on our grocery list or messing up our projects, ruin my day. I learned to see a small mistake as just that: a small bump in the road rather than the end of the world, as I used to do before I met Bill. He taught me that so much of life is mistakes. Who we are is based on how we deal with those mistakes and how we react in the life’s obstacles. We can cry or we can laugh, and it is always better to laugh.

Bill also taught me how to die. August 10, 2005.

Monday, May 25, 2009

Material things don't really matter

I know, we've all heard it! But it's really interesting when you finally "get" it. I'm not great with my ability to totally recall bible verses, but I know there is a passage somewhere that goes something like "ashes to ashes, dust to dust, we shall all return to our maker". Frankly, I'm a 70's girl and think that the band Kansas got it right with "Dust in the Wind", one of my all time favorite songs to belt out in the car....but I digress.

Because, we had a year to spend together and say our goodbyes, Bill and I had the chance to talk about what he wanted, what his life would stand for, and how he wanted to die. At first I was pretty "creeped out" - no one rationally chooses to talk about death, the meaning of life and how you want to be remembered! Do you?? But once he convinced me that he was serious, I swallowed hard and agreed to just listen. Turns out, it took the full year, but it was one of the smartest things I ever did! For the record, it's not easy to have these conversations, but for me, I received the ultimate peace. I didn't have to guess or wonder what he wanted....I already knew.

My husband was a firefighter for 20+ years. He loved his job and was really good at it! He left the department and went to work for Sprint PCS. Again...he was really good at what he did. Up until the day he went on disability, he was actively working with emergency service providers to fine tune the response program for 911 calls from your cell phone in Northern California. Over the years, he touched (and saved) a lot of lives. But he often wondered if it was "enough".

Bill was part of a UCSF memory and aging study, conducted by Dr. Bruce Miller and his extraordinary research team. The sessions were informative and fun - something to look forward to. During one visit, because of the family history of ALS and FTLD, we were asked to consider "gifting" his brain and spinal cord to the research program. It would be autopsied and contribute to the ongoing research. After talking it over, Bill decided that if he never did anything else with his life, at least he could consciously contribute to the process of trying to find the key to ALS and FTLD. Turns out, for him, that would be enough!

On our next visit, we agreed to the donation and signed the necessary paperwork. We were all finished and as we were about to leave, the program manager, after thanking us profusely, asked "what would you like to do with the rest of the body?" eeeeeeeeeeeerrrrrrrrrhhhhhhhhh What?! Turns out, they really wanted JUST his brain and spinal cord. In true style, he quickly typed the following response on his laptop..."Well, I'm not gonna need it!". They looked at me and I (equally as quickly!) assured them that I did not want it! Lucky for us, the University has a Willed Body Program. It's awesome! We signed the additional paperwork and never looked back.

As the ALS progressed, we talked about everything and he even helped with the arrangements for his memorial service. His only request was that when he died, he wanted to make sure that his "never give up" silicon bracelet and his golden retriever, beanie baby went with him. It's a long story about the beanie baby, but suffice it to say, it was important! We ultimately had to leash the beanie baby to his wheelchair to make sure they were always together!

On August 10, 2005, Bill passed peacefully in his sleep. Emmy, the angel aide from hospice, arrived in the early morning to give him his last bath. After a quick discussion, it was decided that he didn't need any clothes - that a clean sheet would suffice for his final ride to the University. That was it! He came into the world with nothing and would leave in exactly the same way, with 2 small exceptions. Truly, material things do not matter in the final hour.

The rest of the hospice team arrived to help me through all of the final details. And finally the team from the University arrived, carefully and respectfully loaded him onto the gurney, covered him with a bright blue, stretchy cover and escorted him back to the university lab. For all that it was sad, the process was actually pretty wonderful. I had little to think about and I was comforted to know that he was in good hands, doing exactly what he wanted to do.

Later that evening, as my head finally hit the pillow, I had a chance to think about the day. I felt really good about the decision to donate, but...I had this random thought! And...from time to time, I reminisce and wonder about the student who opened the drawer to begin the autopsy. I can't help but wonder if they thought "hmmmm, naked guy with a bracelet and a beanie baby. I'll bet there's a good story here!"

In the end, it's not the material things that matter. I believe it's how you lived your life, thought of others and made people smile.

Friday, May 22, 2009

The New Road

Starting over without your life partner is not easy. In fact, I am inclined to agree with what many say about ALS. It SUCKS!

The reality is, while he is never any farther from me than my own heartbeat, my best friend and life partner Bill will never again share my bed, tease me about my terrible joke telling skills, "handle" the bugs and rodents that occasionally show up or even send up his distinctive "meow" because I've wandered away from him in the grocery store and he can't find me. This, and oh so much more...I miss.

So...each and every day I have a choice. I can (attempt to) stay firmly rooted in the past, where it's familiar, where I would like to be. Where Bill and I were - together. I can stay in bed, under the covers, and let the world go on its merry way. I don't have to participate and you can't make me. (sound like a petulant 3 year old you know?!) I did in fact, choose this option in the first days and weeks following Bill's death. I can definitively tell you that it's dark and not particularly interesting under the covers!

So the only real option for me seems to be - put on my big girl knickers and a brave face, pack a snack and hit the new road. I've learned and come to appreciate, that if I am nothing else...I am resilient. I am not wired to live in the past....I live in the here and now. Unfortunately, I'm told that I make grieving look easy, or worse, that I didn't grieve at all?! For the record, I grieved along the way. Every day, some new bit of functionality was lost and Bill had to hand that off to me. Trust me, we both cried.

So the question is, how to keep the bravery going? Just as ALS has its own path with every patient, so the recovery path is different with every survivor. With Bill's passing, I knew that fundamentally I was different. But when I looked in the mirror, I saw the "same" me. I would get tripped up and start the crying all over again. And we all know what that looks like! After a good cry, you can't breathe, your eyes are red and swollen, your nose is runny and red from blowing, you have a raging headache and in general...look/feel like crap! Great!? How would I ever break the cycle?

For me, it was a change in haircolor. I will forever be grateful to my hairdresser, and good friend Alisa who mixed her magic and transformed me from blonde to the red I should have been born with. This one small change put me on the firm road to recovery. We did not get the red "right" the first time, but the change was transformative. Each time I looked in the mirror, I literally saw a new person. In time I began to think differently. I began to act differently and with each baby step, I got stronger and more confident in my new path. It's not always easy, but each day it gets easier and I have never looked back. Thank you Alisa...you are a genius!

SPECIAL NOTE: DO NOT TRY THIS ON YOUR OWN! Seriously. If you choose to make a significant change with your haircolor, go to a trained, certified colorist. Get recommendations and spend the money to have it done right.

Thursday, May 21, 2009

SHARE THE CARE: Offering help

Some time ago, I wrote a post entitled Ask for help / receive offers for help graciously. In it I wrote, "We are just not programmed to receive help. How often is it beat into our heads (from childhood!), “it is better to give than to receive”? Well, the truth is, somebody forgot to close the loop on this little axiom. If nobody receives, it makes it damn HARD to give!"

I had a conversation about a week ago with someone who agreed with my sentiment but shared a slightly different perspective. She said "I would love to have some help! I want help, I know I need help, but with everything I'm trying to cope with, I can't always articulate what I need. The truth for me is that when you ask me "what can I do to help you?", the offer is so vague, my brain goes into overload and I just can't answer!" Hmmmmm. We finished our conversation and went our separate ways.

A bit later in the day, I walked into a card store and was immediately greeted with "May I help you?", and the "how can I help" conversation came rushing back...in a flood. I've had extensive sales training over the years, and the #1 taboo in sales is to greet a customer with "may I help you?" It's too overwhelming and immediately invites the customer to put up his/her defenses. (All together now..."no thanks, I'm just looking!") In that instant, I understood what my companion was trying to say about offers of help.

The same way I've taught my team members over the years to greet customers with ANYTHING but "that sentence" (I've actually levied fines to retrain my forgetful team members!!!), I thought it would be helpful to share some specific alternatives to "How can I help?". This is a "starter set" to consider. Just remember the goal....narrow down the options for the patient/caregiver - so that you are much more likely to get a positive, definitive answer and everyone wins!

The photos in this post are of just a few of the many angels who inspired this post and came to my rescue....more than once!

  • I make a mean tuna cassarole and my family raves about my spaghetti. Which does your family prefer? (Obviously, insert your personal specialties!!!)

  • I am free to run the "kid shuttle" on Monday or Thursday. Which would be better for you?

  • I have an hour on Saturday to pull weeds or mow the lawn. Which chore would you like to delegate?

  • I can help you with household chores for about an hour - you know change beds, fold laundry, etc. How about Tuesday evening around 7 or Wednesday after 3?

  • I can take the kids Friday or Saturday night for a sleepover, which works best for you?
You get the idea! PLEASE add to this list by posting your suggestions! Another alternative: Don't ask - just DO!

Most of these suggestions require little or no planning and best of all, you can do them whenever YOU have the time, energy and inclination! Please keep your friend's temperment and your relationship in mind!! A word of caution...in the interest of fair disclosure: following any of these next suggestions is potentially risky! However, I am reasonably certain that even the most die-hard indivualists would appreciate it if you were to:
  • Take your kids, a couple of rakes and some big trash bags and just rake the leaves in your friend's yard. or...Trim the hedges. or....Mow the lawn. or...Deadhead/fertilize the roses. Other???

  • Shovel the driveway

  • Safely, with a buddy, clear the gutters. or...Wash the outside windows. or...Wash a car left in the driveway.
Your imagination is the only limit to builiding your Mitzvah list. Let me know how it goes!

Life is like needlepoint...thoughts on perspective

My mom's mom, my "Grammy" Jean, was an artist. She (front lower right in the yellow shirt) doesn't look like it here, but in her day, she was an accomplished painter, seamstress, sculptor, knitter and so much more. She also created beautiful, large scale tapestries (think love seats and major wall installations!) in needlepoint. The canvas on the right side of the photo is her interpretation of The Three Wise Men. She often said that all of her brains were located in her fingers! I don't think that's exactly true, but she was truly gifted!

When I was young, my gramdmother would patiently try and teach me the fine art of needlepoint. As you might guess, the operative word in the previous sentence is "try"! I've never gotten the hang of it! While I'm not great with needlepoint, I am very blessed to have inherited not only her name, but some of her creative talent. I feel very close to her whenever I am in my studio making jewelry.

Anyway....a few years ago, a co-worker gave me a new appreciation for needlepoint! As a metaphor to appreciate the beauty that lies in the trials of life. Cindy is a very devout Christian woman with her own special ministry. To help people understand the big picture, she frames her conversations in the context of needlework. Her theory...when you are the artist, your skill and confidence determine how you approach your project.

Beginners head to the local craft/fabric store and select a kit with an appealing design. The canvas is pre-printed and the yarns, colors, design and very often the tools are all neatly tucked into the package. Assuming the artist has even a modest amount of talent and patience, the finished project is pretty well assured and generally looks beautiful. However, if you've ever looked at the back side of a beginner project, you know that the view is less than beautiful. Knots, frayed threads, crossovers, slipped stitches, and more decorate the back of the canvas. Which is why beginners will inevitably head to the local frame shop and have the framer stick a piece of cardboard over the back....to cover it up!

On the other hand, if the artist is accomplished and confident, a pre-printed design is rarely, if ever selected. The artist gets an idea and then selects a blank canvas, the yarns and embellishments which suit the mood. Very often, timing and the yarns dictate the final design and I have seen my grandmother change her mind in the middle of a project! Only the most confident can do that and have it turn out to be anything in the end!! But even the most accomplished needlework artist still has her (his...my Great Uncle Ken did exquisite counted cross stitch!) knots, frayed threads and less than perfect stitches. Instead of leaving and covering up the imperfections, they will patiently work until the back is almost as beautiful as the front. There are still knots, but they are usually small and work into the grand design. The artist may even share the story of how the knot came to be and how she worked through it.

I believe in God. And this will sound presumptive, but I'm pretty sure God took needlepoint lessons from my grandmother! Here's the tie-in. We - as humans - are threads in one really big, gigantic tapestry and God is an accomplished and very confident artist. God does not need a pre-printed design, He ultimately knows the design for each of our lives. I, like Cindy believe that He knows exactly the colors (situations) and threads (people) to be used in the design for each of our lives.

Seriously....take a minute to think about this! He knows the joys and the sadness, the circumstances, the pain, the reactions....everything. Each and every person you come into contact with is a thread in your tapestry. Some are around briefly and add an accent. Some are in your life for a while, fall away and come back to fill in another part of the canvas. Others are in your life longer and create part of the focal design. Still others form the borders or add special embellishments. Each circumstance brings you into contact with more people (threads) for your special design. And you....are a thread in the lives of everyone you know or have come in contact with. (Kinda takes your breath away there for a minute!?)

As we make choices, we potentially change the design. Yet He works with us to weave an incredibly beautiful, rich, colorful, tapestry that we each call a life. He directs the path, and is responsible for some of the knots and slipped stitches. But I believe that He is a patient artist and works to minimize the impact. But there are times, very often through our own choices and actions, that we are the ones creating the knots and loose stitches of our lives. We can work patiently to work through the knots or we can become frustrated and tie them ever tighter. We can turn to Him and count on his perspective to help ease the bumps and crossovers. We can learn to appreciate the beauty of the process or choose to look for something to cover up what we don't want seen.

To Him, it is all part of the grand design and it is completely beautiful....knots and all! To us...maybe not so much! I've come to believe the difference is perspective. He is always looking at the front of the canvas and we are looking at the back! What if we changed our perspective?

Memorial Day - a tribute to the freedom fighters

General Order Number 11 of the Grand Army of the Republic was the document that established Memorial Day, or Decoration Day as it has been also called, as a nationwide observance. It is appropriate to honor our military heros and their families any time, as demonstrated by the ALS Association during the recent ceremony at the Tomb of the Unknowns in Arlington National Cemetary.
With so many of our military veterans, returned safely to loved ones, only to find themselves under attack from ALS, it is fitting to consider the following passage in the orignal General Order: "...Let us in this solemn presence renew our pledges to aid and assist those whom they have left among us, a sacred charge upon a nations gratitude the soldiers and sailors widow and orphan."

Please take a few minutes this weekend to recognize and thank (even silently) the men and women who have given their lives to defend and preserve our way of life. Better yet, take action and write to your representatives in Washington, DC. Ask them to support the 2009 Public Policy priorities set by ALSA National. Visit the Advocacy Action Center to learn more.

To read the full text of the General Order...


Wednesday, May 20, 2009

CA Income Tax Check-off initiative update

As part of the stack of bills introduced and signed into law by Governor Schwarzenegger late last year, a tax credit check-off box benefiting ALS research was added to the 2008 CA State income tax return. Initially, the bill was not scheduled to go into effect until the 2009 tax year. However, thanks to some very quick action taken by the Franchise Tax Board, CA taxpayers were able to make a difference, one year early!

The 896 early birds who filed in January 2009 designated $8,630 toward ALS research. Avg donation per filer was $9.63

Through March, 8000+ taxpayers had designated $86,154 to the fund. The average donation thru March was $10.76 per return.

April filers were even more generous!! 6240 Californians checked the ALS box and an additional $76,931 was directed to the research fund. Avg. donation on the April returns: $12.33!

So....the totals for the 2008 tax season are: 14,248 returns, with an average donation of $11.45 per return, for a grand total of $163,085 designated for research. Hard times always seem to bring out the best in people, and it’s amazing (and gratifying!) to see how quickly it all adds up!

You can check our progress, by clicking the following link to the contribution report: http://www.ftb.ca.gov/individuals/vcfsr/reports/023.pdf
PS: If you filed an extension...please remember to "check the ALS box" when you file your return.

Advocacy in action...

Anyone following this blog has probably figured out that I am passionate about advocacy on behalf of ALS patients and families! I truly believe it is imperative for us to gather as a community and raise our collective voices. We must be heard. Legislators at all levels of government must hear and understand the devestation ALS wreaks on individuals, families AND our communities.
2 weeks ago, 1000+ ALS patients, family members, friends and numerous professionals gathered in Washington, DC for the Annual ALS Conference and Advocacy Day on Capitol Hill. It is a powerful and exlihirating event. What I have learned however is that Advocacy is a year round job! As constituants, we must build relationships with our legislators. It is not easy, but it's not as tough as being an ALS patient!

For several months, I've been writing a quarterly newsletter discussing various topics relevant to California ALS patients, more specifically, how to use the tools that are currently available to reach and inform legislators and the media. The newsletter has been limited to advocates in Northern California...so the natural progression is to move the newsletter to BLOG format!

Please check back regularly for news/tools you can use to bring ALS to the attention of your own elected officials. Use these tools to learn who represents you in Washington, in your state and in your local community. Get to know their staffers in the local office. Share your story. Help them understand ALS. Together....we can (and will!) make a difference.

Monday, May 11, 2009

Join Our Virtual Advocacy Day: Support the ALS Advocates on the ground in Washington DC

Even if you can't be at this week's Advocacy Conference in Washington, you can still make a difference! Today, we need every ALS Advocate who is not in Washington DC for the Advocacy Conference to contact their U.S. Senators and urge them to support continued funding for the ALS Research Program (ALSRP) at the Department of Defense (DOD).

Specifically, ask them to sign the "Casey-Snowe" ALS Dear Colleague letter, which is being circulated in the Senate this week. The letter calls on Congress to provide $10 million in funding to continue the ALSRP, the only ALS-specific research program at the DOD. Continued funding for this program also is critical because, unlike many other research programs that focus on basic science, the ALSRP is specifically designed to develop new treatments for ALS. So please contact your Senators TODAY.

The nearly 1,000 advocates from across the country who are attending the Advocacy Conference will put a face on this disease (and your message) when they meet with Members of Congress on Tuesday, May 12. With your help, we can send a loud and clear message to Congress. So please contact your Senators TODAY. And tell your friends, family and colleagues to do the same. A sample letter you can send directly to your Senators is available in the Advocacy Action Center of the ALSA National website: http://capwiz.com/alsa/home/.

If you don't know the names of your Senators, don't worry. The Advocacy Action Center will identify them for you and allow you to send a message to them directly from the site. A copy of the Dear Colleague letter being circulated by Senators Bob Casey (D-PA) and Olympia Snowe (R-ME) is available by clicking here .

Thank you! Through advocacy, we are creating the roadmap that will lead to a cure!
Photo: Patient Lorri Coppola, 2007 Advocate, Lost her battle with ALS in 2008.

Wednesday, May 6, 2009

New Clinical Trial @ Emory University for Familial ALS

Even though Bill has been gone for several years, I continue to receive information regarding clinical trials. In the past, I've discarded the notices....I don't need them. However, I thought it might be useful to post the information here.

Department of Neurology @ Emory University School of Medicine

"...We will be starting a clinical trial of a drug called arimoclomol (pronounced ari-mok-low-mole) for people with rapidly progressive forms of ALS caused by mutations in the SOD1 gene. " "If the genetic cause of ALS in your family is unknown, then we'd like to encourage you to contact us so that we can find out if the SOD1 gene is the cause. Please contact Cathy Raiser, study coordinator at craiser@emory.edu or (404) 712-8578." "If you have ALS and we can establish that a change in the SOD1 gene is the cause of ALS in your family, then you may be eligible to participate in this clinical trial. "

Michael Benatar MBChB,DPhil
Assistant Professor of Neurology and Epidemiology
Emory University

There are a number of links to clinical trial sites. Here are a few I've found. Please feel free to add to the list.

Monday, May 4, 2009

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!


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?


  • Sign up, lace up your sneakers and walk in a Walk to Defeat ALS.
    -Find a walk:
-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:
    -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:
    -There are LOTS of opportunities! We can find a job to suit your skills and time commitment.

  • EDUC[ATE*]

    • Learn the answers to FAQs
  • Speak up and speak out.
    -Educate your friends, family, co-workers, everyone in your personal community. Get them involved!


    • 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