New York Chapter Thanksgiving Program

As part of The ALS Association Greater New York Chapter’s annual Thanksgiving Program seen here is volunteer Christian Hespe delivering a Holiday basket to caregiver Susan Turin from New Hyde Park, LI. The program is offered to help ease some of the stress that comes with the holidays for PALS and their families. This year we are happy to say we were able to donate a family meal and a gift basket to 8 families.

Robert(PALS)and son Daniel happily share the visit
as Christian delivers a holiday basket.

Smoking May Now be Considered an Established Risk Factor for ALS

While previous studies have indicated a “probable” connection between smoking and ALS, a new study published in the Nov. 17, 2009 issue of Neurology®, the medical journal of the American Academy of Neurology, states that smoking may now be considered an “established” risk factor for Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease.

The findings come from Baystate Medical Center neurologist Dr. Carmel Armon, an ALS researcher and neuroepidemiologist, who came to this conclusion using evidence-based methods to perform a rigorous analysis of studies examining the link between smoking and developing ALS -- a fatal neurodegenerative disease affecting the motor nerves and the voluntary muscles.

Prior to this report, no external factors have been implicated with this level of confidence as contributing to the occurrence of sporadic ALS.

“Application of evidence-based methods separates better-designed studies from studies with limitations that may not be relied on. The better-designed studies show consistently that smoking increases the risk of developing ALS, with some findings suggesting that smoking may be implicated directly in causing the disease,” said Dr. Armon, a professor of neurology at Tufts University School of Medicine and chief of neurology at Baystate Medical Center in Springfield. He is also a fellow of the American Academy of Neurology.

According to Dr. Armon, identifying smoking as an established risk factor for ALS has three implications.

“First and foremost the findings provide a link between the environment and the occurrence of ALS, where none had been previously identified with this level of certainty,” said Dr. Armon.

“Additional implications are that since smoking has no redeeming features, avoidance of smoking may reduce the occurrence of ALS in the future, and since some of the mechanisms by which smoking causes other diseases in humans are understood fairly well, recognizing its role in the occurrence of ALS may help pinpoint the biological processes that initiate the disease,” added the researcher.

The Baystate Medical Center neurologist noted that focusing on processes at initiation of sporadic ALS, and close to it, may provide new avenues to treatment to stop its progression.

“This has been realized in some animal models of familial ALS, but not in humans. The hope that these concepts may apply to sporadic disease and change its outlook in the future is supported by establishing the association of smoking with ALS occurrence,” concluded Dr. Armon.

ALS takes the lives of half of those affected within three years of onset of weakness, with less than five percent surviving more than 10 years. Some 90-95 percent of cases appear to occur at random (“sporadic cases’), with 5-10 percent of cases having an affected blood relative (“familial cases”). An altered gene, several of which have been identified, is implicated in causing familial ALS.

PS 189 Walks for ALS

By Allison Lardner, Walk Manager

On Friday, October 23rd, 2009, the fourth and fifth graders at PS 189 in Manhattan kicked off their inaugural “PS 189 Walks for ALS.” Led by their art teacher, Mary Lambros (who is also the captain of Team Lambros on Long Island), the school ran a three-week long campaign to promote awareness of ALS and raise money to help find a cure. Each homeroom was a “team” and there was a competition for both the highest fundraising homeroom and the top three fundraising individuals. They raised nearly $1,000 and plan to make it annual event.

Thanks PS 189!!

Below enjoy some pictures from the PS 189 Walk.

Recognizing Depression

By Debbie Schlossberg, LMSW

A topic of frequent discussion with PALS and CALS is depression. It almost always comes up at some point in our meetings, either because I inquire or because the PALS/CALS initiates the conversation.

As a matter of fact, I’ve been asked countless times, “Wouldn’t anybody be depressed in this situation?” So it seems there is a widespread belief that depression is a natural reaction to the reality of living with ALS. I’ve been giving this idea much thought and although I don’t want to refute the essence of it (that ALS is often devastating), I have to wonder what, if any, lessons, can be learned from the assumption that actual depression is a universal reaction to a demanding life challenge. What about people we’ve met who don’t seem to be depressed? We know them- the super-copers or people of such enviable faith that they always seem to have a smile on their face. I know that they, too, have their moments, their days, their tears. It does not mean that they are depressed per se, but then perhaps, many of the other PALS who suspect depression may not be really depressed either. Can’t one have moments, days, tears, without labeling oneself as depressed? I don’t think there is an immunity that some people have. Conversely, there are factors which may predispose some of us more than others. Some of the most common “risk factors’ are previous episodes of depression, depression in the family, and substance abuse.

Clinical depression is a complex condition. The symptoms I tend to look for- sleep and eating changes, withdrawal or mood changes, fatigue, can all be physiological effects of ALS. And where does one begin and one end? So even if it sounds like an overused cliché, it really is important to self-assess carefully and to discuss with a care provider for further assessment.

Then, of course the question becomes what to do. I know our docs are very amenable to prescribing anti-depressants when indicated and sometimes they really do help. But sometimes they don’t. And I tell myself that this makes sense. Meds have efficacy in terms of perhaps giving a person a sense that their load is lighter or help with some of the aforementioned symptoms. But it doesn’t take away the trigger for the depression, nor does it help the sufferer learn new ways of coping. That is why study after study show that the best results for treatment of depression come from a combination of medication and psychotherapeutic counseling. Our PALS and CALS often have so much on their plates that the idea of committing to counseling feels like just another task to take up precious time and money. But the rewards can be great: the negative thinking diminishes, sleep patterns improve, and slowly people re-engage in life around them.

So what have my musings taught me? Sadness is not always depression-true depression is not a universal reaction, but if one suspects that they may be clinically depressed, it is important to explore it fully with a trained professional (docs, nurses, or social workers at your ALS clinics) and then aim to treat it with a combination of medication and counseling.

Happy Boo-Day

By Ruth Louison

Ghoulies and ghosties, and three-legged beasties, and things that go “bump” in the night. Here comes Halloween, everyone – adorable children dressed up as fairies and super heroes, monsters and skeletons, carrying bags filled with candy.


Halloween was always fun for me. As a child I dressed up with my sister and my friends and roamed the halls of the huge apartment building in Brooklyn where we lived (and where I live today). My parents couldn’t afford store-bought costumes so I typically wore one of my father’s suit jackets, an old shirt, one of his hats, smeared cigarette ashes on my face and tied a bundle of rags to one of Mom’s brooms. Voila, a hobo! As an adult I have carried my love for Halloween into the workplace. I always wear Groucho glasses at work, and keep a large Halloween bowl filled with candy for all to enjoy.

The best Halloween I have ever experienced took place in 1988. It was the day I became a grandmother for the first time. My ex-son in law called me at 6 a.m. that day and told me that my daughter, Barbara, was having contractions. “Did you call the doctor?” I asked. He said that he hadn’t. I suggested he do that. A few minutes later he called me back and said the doctor had told them to have Barb walk around the house for a while. If the contractions stopped they could assume she was not in labor. “Did you do that?” I asked. He said that he hadn’t. I suggested he do that. The next phone call was to tell me that the contractions hadn’t stopped. He called the doctor and sent a friend to pick me up at my house so that we could all go to the hospital together. I was about to become a grandmother.

His friend arrived about 20 minutes later. I grabbed my purse and my Groucho glasses and we were on our way. I put the glasses on as I walked into their apartment. My daughter was not amused. On the way to the hospital, with Barb’s contractions coming fast and furious, we were pulled over by a police officer for speeding. We were all trying to explain to him that we had a woman in labor in the car, and that if he didn’t let us go he would have to deliver the baby himself. He insisted on seeing her, then without an offer of an escort he let us go.

We arrived at the hospital just in time. As soon as Barb got out of the car, her water broke. My son in law ran into the hospital and emerged a few minutes later pushing a wheelchair while being chased by a very angry security guard. We got Barb into the chair and into the hospital. I proceeded to the waiting room, Groucho glasses on my face. Doctors and nurses walked by wearing witch hats and Domino masks and waved as they passed me. After about an hour my son in law floated into the waiting room and announced that Heather Lynn had been born and was beautiful (well, of course she was beautiful, she was my grandchild). The whole time I was in the waiting room I was very calm. When told that Heather had been born I started phoning family and friends. I was fully unprepared, however, for the emotional tsunami that washed over me when I saw her tiny face for the first time. The circle was complete. Suddenly I understood my mother and my grandmother, and probably all the generations before them.

When Heather was 8 months old she was diagnosed with leukemia. My world was rocked beyond words. Her doctors gave her a 30% chance of surviving to her first birthday and little or no chance of making it to age two. We saw her through chemotherapy treatments, bone marrow extractions and infections. I brought a rocking chair and a pair of Groucho glasses to the hospital and would rock her for hours. The glasses made her laugh and we would take turns putting them on. For her first birthday we threw a huge costume party for family and friends, silently hoping that there would be many more birthdays. Time passed and with the exception of one week when her doctors feared she was out of remission, her treatment was uneventful. At the age of four, Heather was pronounced cured. Naturally every time she complains of a sore throat I panic a bit, but she is fine. This year we will celebrate her 21st birthday. She has grown to be a beautiful, funny, intelligent woman who will go on to do great things with her life.

On Halloween this year as always I will wear Groucho glasses and drink a toast to my beautiful granddaughter. This year she will (at long last, she says) be old enough to join me in that toast. Happy Boo-Day, Heather darling. I love you.

You can visit Ruth at www.oldcarmama.com

Ruth Louison, 63, used to work as a Human Resource Generalist at a local City hospital. Ruth is married with one daughter, two stepchildren and five grandchildren. She's addicted to writing short fiction, baseball (sorry, but she's not a Yankee fan), street rods and drag racing. Ruth was diagnosed with Progressive Muscular Atrophy, which is the fraternal twin of ALS, in March of 2009.

Murphy Golf Outing In Honor of Gaston LaPerche

By Lon S. Cohen (Staff Writer)

On September 26, 2009, a beautiful autumn day, the Murphy clan set out with seventy or so golfers on the grounds of the Pehquenakonck Country Club in North Salem, NY for their annual Golf Tournament. What began 21 years ago as a gathering of friends, relatives and business partners of Jim Murphy for a fun day of golf, has grown over the years into what is now dubbed the Murphy Master’s Golf Tournament. As the years passed and the event grew in proportion, Jim Murphy thought he could put his connections to good use.

“I took a look around and thought, we’ve got a lot of people here,” he said. “We can do some good.”

That’s when, about ten years ago, Jim Murphy decided that the annual tournament would donate proceeds from the day to a different charity or person in need every year. Over the years the beneficiaries were diverse: from a particular player’s favorite charities like helping the homeless to the personal needs of someone close to the golfing group who was ill. And of course there was the outing that went to benefit the victims of 9/11.

This year, The ALS Association Greater New York Chapter was selected as the beneficiary. John LaPerche, a long time golfer, and childhood friend of Jim’s brother, Chris, suggested ALS in honor of his father, Gaston LaPerche. Mr. LaPerche had been diagnosed with ALS and he wanted to give back to the organization that had been helping out the family with patient services.

“I received two calls,” said Jennifer Lowy, Director of Marketing and Special Events for the chapter. “One was to tell us they were doing the tournament to benefit our organization and another to tell me they’d like to come in and give us the donations.”

Because the Murphy family had been organizing this event for so many years they required absolutely no assistance from the organization. From the twelve noon shotgun start to the dinner Jim and his entire family pitch in together to help make the event happen, from making some of the food to organizing the auction. The family affair looks to continue on for years to come as Jim’s children are trying to do a little more each year to take over the event.

The ALS Association Greater New York Chapter wishes to extend its thanks to the Murphy and LaPerche families for thinking of us this year.

It is with great sadness that we announce that on October 14, 2009, Mr. Gaston LaPerche lost his fight with ALS.

The Walk to Defeat ALS Focus On J.J.’s Clan

By Claire Stagg

Our family became aware of ALS 18 years ago, when my grandfather, Joe Corso (aka JJ ) was suffering from pain in his leg. After many doctor visits, he was given the diagnosis of Lou Gehrig’s disease. One of the first reactions he had was “ I never played baseball!” During the seven years that he suffered from ALS we watched this very strong, vital man, who had spent his entire life taking care of his family, now have to become totally dependant on us.

As he slowly began to lose the use of his legs and arms, we were all amazed at how brave and happy he remained with his life. As his family, we were heartbroken watching this person, who had spent his entire life taking care of six children and taking the place of a father to his grandchildren who had lost their father, fight this battle. But never during this time did he ask “Why Me?” He was always determined to walk again and hope to live till 100. During his illness he continued to be optimistic, he loved to go out to lunch and was always asking someone to take him out. He loved his motorized wheelchair, even though you had to get out of his way when he was driving it - he was a menace! He was the love of our lives and we miss him every day.

The last days of his life were spent waiting for the birth of his great-granddaughter Emma. He knew she was born but the next day he lost his fight and left us for good. It is that very same great-granddaughter that has spent the last 3 years Walking to Defeat ALS in Saddle Brook, NJ. She had always heard of Papa Joe and when she saw the opportunity to make people aware she jumped at the chance.

We started a family team called JJ’s Clan and the first year had a team of 22 walkers. Our first year we created t-shirts by using a collage of JJ's photos and each one showed the great smile that was always on his face. We reached out to family and friends as well as business contacts and for the last 3 years have raised over $5,000 a year! Emma has continued to raise awareness by putting cans on the counter of many businesses, as well as trying to get the student council in her school to sell baseballs. She has also written letters to everyone of her teachers asking for their support.

We will continue to support the efforts of The ALS Association Greater New York Chapter in the years to come.

To donate to JJ's Clan Walk to Defeat ALS Team please click here.

Caregiving: Will You Sink Or Swim As A Caregiver?

By Debbie Schlossberg, LMSW

“When people confront an ocean of need, they feel anxiety. Some run for their lives; others jump in and drown. Both reactions are rooted in the inability to stay separate and set limits in a healthy way that balances generosity with self-preservation.” - Roberta Satow, Chair, Dept. of Sociology, Brooklyn College.

“Balancing generosity and self-preservation” is an interesting lens from which to view a caregiver’s dilemma. One end of the spectrum is the inclination to give all of oneself in an attempt to take away our loved one’s distress, to prove the extent of our love. At the other, the inability to face this formidable foe—to turn away and not offer ourselves as much as we should Both are extremes in equally futile attempts to erase the reality of ALS. Most caregivers are able to swim somewhere in the middle but there is always the pull of the tide, the guilt for not ‘jumping in” more. Occasionally the undertow of responsibility is too great for us to bear and it compels us to run away more than is healthy or safe.

So how do you find and keep this steady stroke? How do you keep your head above water without tiring out?

Some caregivers have difficulty describing their coping skills. They view them as a natural aspect of who they are and how they operate. Others can enumerate specific tools. What I’ve observed is that there are certain traits caregivers possess that enable them to attain and maintain this balance:

1) Caregivers who maintain balance are caregivers who set limits. They’re able to take stock of who they are: their strengths and capabilities as well as areas where they have perhaps always tended to seek assistance. With this self-knowledge they construct boundaries. They work to do the best they can within these contours and get help for the rest. By doing this, they minimize the potential anger, resentment, and emotional and physical depletion that can come from striving to meet a bar set too high.

2) They are often good communicators. When faced with a task too great, they know how to say, “I really wish I could do this. But I can’t.”

3) More than anything else, they work hard with the “Re’s”. Re-defining. Re-visiting. Re-inventing. Because they realize that what was normal, what used to work, changes every day when living with ALS. This is perhaps the hardest piece. The importance of maintaining a fluidity, a flexibility. Like the waves which ebb and flow, our seascape changes daily and the best swimmer knows not to fight the current, but to try and let it carry you.

A New Chapter of Life

By Deacon John Fodale & Lois Leatherman

In late 2007 my friend John Fodale was diagnosed with ALS. Like all those around him, I was shocked and terrified by his news, but John seemed comfortable and at ease. Over the next few months, as we talked, I was so inspired by what John told me and how he handled his situation that I began to record our dialog. He isn't usually forthcoming about his feelings, but would answer questions directly. What follows is a digest of some of those conversations.

Lois: How did you feel when you first were diagnosed with ALS?

John: I was diagnosed with ALS on November of 2007. What I felt inside was unexpected. I felt relieved, because I knew how I was leaving this world. All my life I lived worrying about getting cancer, stepping on a rusty nail and dying of gangrene, being eaten by a shark when I was swimming or dying in a plane crash. And so I felt relieved because I knew the vehicle by which I was going home. When people ask me about how I felt about finding out I had ALS (and they always do), I tell them I felt very good, and I comfort them by saying that everyone takes a different bus home.

Lois: How has ALS changed the way you see your life?

John: Since I’ve had ALS, I’ve begun to see life differently. Before ALS life It took on the image of me being in an airport. Before I got on the plane I could see everything at eye level, but that wasn’t everything that could be seen. As the plane took off I could see the different patterns of the land because you have a different view from above. I began to see my life like that. Like God was showing me how things fit together. How there was great harmony and nothing in my life was wasted. I began to see my life as a golden thread that was sewing a quilt together, and I understood that every person’s life was like that thread. Making them part of a story. Sometimes people feel that their lives aren’t right, and they should have done things differently. Although some of that’s true, God shows you that, in total, our life is of great value in making this quilt.

The other day, I had a friend and her husband stop over at lunchtime. Her husband is on dialysis, and for the last week or so he’s been telling her he wants to die. At lunch, I began to talk to him about how I felt when I was diagnosed with ALS. I said felt terrible as a man, to put this burden on my wife to help me so much, because I can’t move, I can’t turn over in bed, I can’t do things for myself. But I said all my life I’ve provided for my family, and I’ve done all I could do. I find that at this stage of my life that I must take a lesser position and ask for her help. It doesn’t make me less of a man. It’s something all people go through, I think, when we have to give up control, or the ability to do for others we get angry or depressed. But when we come to this point in our lives we begin to reflect on past actions and we notice that there are things that we could have done better. But we must understand that at the time we made these decisions, they were the right decisions for us. We must remember that we are human and we shouldn’t be too hard judging ourselves because we did the best we could. No matter what mistakes we make, when God comes into the picture he changes it to good. Some days I set a good example, and people said I want to be like that, and some days I set a bad example and people said I don’t want to be like that. In any event I served good.

By the end of the conversation the man felt better about himself. The most important thing was that he felt he wasn’t alone in his feelings. He understood that I felt the same way, and that anyone in this corridor of life feels the same way.

I began to understand that even in my condition; of being homebound, I could still help others by sharing my experiences with them and pointing how valuable their lives are. In spite of any handicap or whatever we are going through we can always help others with a kind word, or by sharing a feeling. For us it’s not the end of life but a new chapter.

Five Reasons ALS Patients Should Get Outside

by Fern Cohen

Fern Cohen is a former teacher and a writer with ALS. She frequently writes guest posts for The ALS Association Greater New York Chapter's blog. Read Fern's blog, "Forced to Sit Still and Shut Up -- Life Before, and During ALS" at http://xr.com/fern. You can also follow Fern on Twitter at http://twitter.com/fec139.

Before the weather gets too cold, all PALS should grab opportunities to leave the house, even just for a half-hour, every day --or longer, if possible. Even if lack of transportation or mobility keeps you from venturing too far from home, just go outside!! Here are 10 reasons why.

1. Dr. Mehmet Oz, renowned physician, and now FOX-TV talk-show host -- and I might add my absolute guru-- says vitamin D is one of the most important immunity-boosters we don't get enough of. The recent skin-cancer scares have rightfully convinced us to take less sun, and to cover our skin with sun-block. That's a smart move; however, we are now not absorbing vitamin D, which is also beneficial to our bones. And, Dr. Oz says that drinking vitamin D-enriched milk or taking supplements is not as desirable as getting vitamin D from the sun. So just a half-hour in the autumn sun can refill our reserves of vitamin D, which is fat-soluble anyway, so it is stored for a while in our bodies.

2. Nothing gives peace and serenity like communing with nature. Before ALS, I never had enough time to stop and really look at the animals in my neighborhood. In my case, there are just squirrels, pigeons, sparrows, and the occasional crow. Some of you are more fortunate and have a big assortment of wild animals, and maybe even farm animals nearby. But even squirrels are fun to watch, and pigeon behavior can be fascinating. If you love dogs as I do, watching the dog-walking parade between 5 and 8pm can be a lot of fun. See how many people look like their dogs, dress up their dogs, and permit you to pet their dogs, an activity that is said to lower blood-pressure.

3. If you can, go to the local library, park, street festival, or coffee house, for people-watching or behavioral studies. Notice how many different coffee combinations there are, and how they are often not repeated twice, from venti mocha with almond syrup to tall Earl Grey with soy milk and sweetener, to Blue Mountain with two espresso shots and skim milk. It's fascinating. Studying people has become my favorite pastime, and it also takes the attention off myself and wondering who's looking at "freaky" me.

4. Getting out of the house is the best way to show everyone that you are living with ALS, not waiting to die from ALS. Any way you can show the world that we are more than just sick people lying around wasting away. I recently received an email from an out-of-state cousin who asked "Do you ever get out of bed?". I sent her pictures of me at the beach and at the ALS Walk to d'Feet, and she was very surprised because my extended out-of-town family describes me as "very sick", so she pictured me as spending all my time in bed. Although there may come a time when many of us become bed-bound, always do whatever you can, whenever you can

5. Isolation is a big cause of depression and hopelessness. It is so easy to stay alone and inside, especially if the internet is a big part of your life [as it is for me], you feel weak or tired, or going outside seems like a big production. It is so easy to say "maybe tomorrow", but tomorrow the weather may be less conducive to going outside, you may feel sicker and weaker tomorrow. Do it while the weather is tolerable, and while you can. In fall, there is nothing more beautiful than the colors. In spring, the first flowers and baby animals always give me a mood lift. In winter, go out for at least a few minutes if possible, to look at freshly-fallen snow. And in summer, limit your outdoor time to early morning or late afternoon, but enjoy the longer hours of light, because they are never around long enough.

New “Antisense” Experimental Therapy Clinical Trial Announced

A new experimental therapy using an approach known as antisense, in which a drug is designed to shut down the RNA (Ribonucleic acid) that is responsible for the production of disease-causing proteins, is being prepared for a clinical trial in people with a familial form of ALS later this year. The clinical trial follows research funded by The ALS Association through TREAT ALS (Translational Research Advancing Therapy for ALS), our research pipeline that funds and facilitates the development of treatments for ALS based on important laboratory findings.

The research that resulted in the identification of this antisense drug was first funded by The ALS Association in 2003, and has been developed for the clinic through an academic/industry partnership. ALS Association-funded researchers Drs. Don Cleveland Richard Smith and Timothy Miller, in partnership with Isis Pharmaceuticals in Carlsbad, Calif., initiated experiments in a rat model of ALS to determine whether reducing the amount of SOD1 protein may be beneficial in treating the disease.

Initial research in rat ALS disease models demonstrated that the antisense drug inhibited the mutant SOD1 protein, resulting in prolonged life of the rats. Time of treatment for the rats was near onset of symptoms, reflecting the scenario for actual patients who often have definite and even advanced signs of motor neuron loss by the time of ALS diagnosis. Researchers hope that this therapeutic approach will provide a similar therapeutic benefit in people with familial ALS due to mutations in the SOD1 protein. The antisense approach could also prove valuable in treating other neurological disorders, such as Huntington’s disease.

Together with the biotech company Isis, led by Dr. Frank Bennett, Dr. Timothy Miller, Dr. Merit Cudkowicz and Dr. Richard Smith, the team has conducted the necessary research to submit an Investigational New Drug Application with the Food and Drug Administration (FDA) to test this novel approach in people with ALS. The application was recently submitted to the FDA. The ALS Association will provide funding for the clinical trial.

“This achievement, and the process of taking an idea from the laboratory to the clinic, underscores the importance of The ALS Association’s TREAT ALS pipeline and the financial support provided to the investigators,” commented Senior Vice President, Research and Development Lucie Bruijn, Ph.D. “The development of new treatments is an extremely challenging and costly process. It is only through the support of our generous donors that this type of research is made possible.”

The ALS Association’s research program brings together the best scientific minds from the research and biotech communities to focus on finding the cause of ALS, developing effective treatments, and ultimately, a cure. We are currently funding more than 80 studies around the world, partnering with the best minds in the scientific and biotech communities. To learn more about how you can support The ALS Association’s premier ALS research program and studies such as the antisense clinical trial, visit our website at www.als-ny.org.

People interested in learning more about the clinical study should contact the MGH Neurology Clinical Trial Unit at (877) 458-0631 or by email at mghneuroclinicaltrialsunit@partners.org.

New Guidelines Identify Best Treatments to Help ALS Patients Live Longer, Easier

New guidelines from the American Academy of Neurology identify the most effective treatments for amyotrophic lateral sclerosis (ALS), often called Lou Gehrig's disease. The guidelines are published in the October 13, 2009, issue of Neurology®, the medical journal of the American Academy of Neurology.

“While we are waiting for a cure, people need to know that a lot can be done to make life easier and longer for people with ALS,” said lead guidelines author Robert G. Miller, MD, with the Department of Neurology at California Pacific Medical Center in San Francisco and Fellow of the American Academy of Neurology.

Click here to view the new guidelines from the American Academy of Neurology.

ALS is a rapidly progressive and fatal neurologic disease that attacks the nerve cells that control voluntary muscles. Eventually people with ALS are not able to stand or walk, or use their hands and arms, and they have difficulty breathing and swallowing. Most people with ALS die within three to five years from the onset of symptoms. However, about 10 percent survive for 10 or more years.

“The new guidelines are extremely important for people with ALS and the neurologists who provide their care,” said Sharon Matland, vice president of patient services for The ALS Association. “The treatments and the multidisciplinary approach to care provide standards that are considered the most helpful in promoting improved quality of living with Lou Gehrig’s Disease as well as positively impacting life expectancy.”

According to the guidelines, the drug riluzole should be offered to people with ALS to slow the rate at which the disease progresses. Riluzole is the only drug approved by the U.S. Food and Drug Administration to treat ALS and has a modest effect on prolonging survival.

The guidelines also state that life expectancy will likely increase and quality of life may increase for people with ALS who use an assisted-breathing device and a feeding tube known as a PEG tube, since nutrition plays a critical role in prolonging survival. The guidelines also recommend doctors consider offering their patients botulinum toxin B to treat sialorrhea, also known as drooling, if oral medications do not help. Moreover, doctors should consider screening their patients for behavioral or thinking problems because studies show many people with ALS have these problems. Such problems might affect some patients’ willingness to accept suggested treatments.

“Important treatments available for people with ALS are often not suggested by doctors and not used by patients,” said Miller. “It’s important that people with ALS know that more treatments are now available to ease the burden of the disease and that they should see neurologists who are aware of these new guidelines and follow them.”

In addition, the guidelines recommend people with ALS enroll early in a specialized multidisciplinary ALS clinic to optimize care. “Attending a multidisciplinary clinic will likely increase survival and access to treatments, and may improve quality of life,” said Miller.

For more information about the American Academy of Neurology, visit http://www.aan.com or http://www.thebrainmatters.org.

All Play and No Work…

It’s Tuesday.

Oh, wait, maybe it’s Wednesday.

No matter. At 9:00 on Channel 11, I can watch Maury Povich confirm to the poor guy sitting next to the angry young woman that he is (or is not, as he vehemently protests) her baby’s father. At 11:00 there are several choices: Jerry Springer’s trailer park wrestling match, or one of the many TV judges who will or will not award the plaintiff $5,000 for pain and suffering because of a cell phone bill that the defendant refuses to pay. If that doesn’t suit me, I can switch to CSI: Miami or one of the true-life forensics shows as I sit on the couch and do crossword puzzles. The highlight of my afternoon arrives at 4 p.m. when I watch Judge Judy. My exercise consists of walking from the sofa to the bathroom, to my computer, and back to the sofa.

I am not working any more.

All the days seem to run into each other. The only difference seems to be the time the sun sets, a few minutes earlier every day. My mornings, once scheduled and hectic in an attempt to be ready to leave for work on time, are quiet now. I try to sleep late but years of awakening at 6 a.m. have carved a silent alarm clock into my brain. I take my medication and wait the prescribed hour before nibbling on breakfast and savoring my first gallon of hazelnut coffee.

Before I finally gave in to my illness and admitted that it had become too much for me to handle, I would arrive at work and immediately prepare a ten-cup pot of coffee. Now I drink instant because it’s easy. Hard-headed and stubborn, I would drag myself to work no matter how exhausted I felt, log on to my computer and check to see if we had received approvals on vacancy requests we had submitted to the powers that be. I prepared job postings and drafted new requests to be submitted for approval. I screened applications, and was busy from 8 a.m. to 4 p.m. Now I log on to Facebook to see what my friends are up to, check my email a dozen times a day, and play four-deck Free Cell.

Always reluctant to submit to the will of another entity (human or otherwise), I told myself that I would not give in to this disease and would continue working until I was unable to walk. That was not the case. I feel defeated; beaten; crushed. The first day or two brought much-needed rest. The days that followed have brought bouts of tears, frustration, and helplessness. While I used to have work-related information committed to memory, I have now memorized the TV listings for what I have always referred to as “stupid daytime TV.” A couple of days of soap operas and talk shows can cure any illness and send people running back to work, I’d say. I wish it were true. I would happily watch a week of Jerry Springer if I thought it would bring me back to where I was just a month ago. I fell while walking in my living room, and could not get up. I was alone; my husband was at work and not expected home for three hours. As I struggled to move myself from one side of the room to where I could at least lean against the sofa, I could not help thinking that had I been at work this would not have happened. Then I remembered it was Saturday.

My daughter, realizing how devastating this situation is for me, has begun creating a web site for me (this is something I had thought about for a while but being a “computer klutz” would have been unable to accomplish without a lot of help). On this site I will be able to start a blog, post the short stories and poems I have written over a span of many years, and get back in touch with my heart. I will be busy once again, but this time I will be working for me. If I cannot walk it will not make a difference. As long as I can write, I will be fine.

You can visit Ruth at www.oldcarmama.com

Ruth Louison, 63, used to work as a Human Resource Generalist at a local City hospital. Ruth is married with one daughter, two stepchildren and five grandchildren. She's addicted to writing short fiction, baseball (sorry, but she's not a Yankee fan), street rods and drag racing. Ruth was diagnosed with Progressive Muscular Atrophy, which is the fraternal twin of ALS, in March of 2009.

CDC/ATSDR Launch National ALS Registry Website

TodThe Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry (CDC/ATSDR) has launched the National ALS Registry website. This is the first phase of building a website that later will include an online portal where people with ALS can enroll in the ALS Registry. The website is available at www.cdc.gov/als. The ALS Association also will host a link to the Registry website on our homepage at www.als-ny.org.

In this initial phase, the ATSDR will provide up-to-date information about the registry, including answers to frequently asked questions such as who can enroll in the registry, whether enrollment is mandatory, and who will have access to the registry. The site also will include helpful information about the disease itself, including links to information about ALS research and clinical trials as well as to organizations, like The ALS Association, that provide assistance and support to people with ALS and their families.

In the next phase, the website will enable people with ALS to enroll in the registry. However, before that can happen, ATSDR must first obtain an Institutional Review Board (IRB) approval and other approvals required by law to ensure that personal information collected by the registry is kept private and protected from misuse. This process already is underway and The ALS Association will assist in any way we can to secure the necessary approvals in order to speed enrollment in the registry.

Enrolling in the Registry

As ATSDR pursues the approvals necessary for the next phase, we are partnering with the Agency to keep the ALS community informed and we will notify PALS as soon as they can self-enroll via the ALS Registry website. If you would like to receive this notice, please visit The ALS Association's website at http://capwiz.com/alsa/mlm/signup/ and sign-up to be an ALS Advocate. Please select ALS Registry when signing- up. This is especially important because, due to privacy rules, PALS will not be able to request that ATSDR notify them about the status of the registry, including when they can begin to enroll. Also remember to chose NY-Greater New York Chpater as your local chapter.

If you have any questions about this update, please contact The ALS Association at als@als.org or call 1-212-619-1400.

Persons with Amyotrophic Lateral Sclerosis (ALS) Wanted for a Research Study on Quality of Life

Updated September, 2009

Researchers at Penn State College of Medicine are seeking participants, age 18 or older, with amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease) for a research study on why individuals access a multidisciplinary clinic versus receiving traditional practitioner care. Participants will also be asked questions about Quality of Life (QOL) and problem solving skills. The purpose of the study is to better understand the QOL, and problem solving skills of patients with ALS who attend multidisciplinary clinics vs. those who do not. Participants will complete a questionnaire (online or with a paper and pencil version) that asks questions about physical health status, quality of life, social problem solving skills, and use of medical services for care of ALS. Survey responses are confidential.

To access the online questionnaire, go to: http://www.surveymonkey.com/s.aspx?sm=5th76Gj1zs8opxxrBMUM5w_3d_3d

For more information or to request a paper copy of the questionnaire, contact the study coordinator, Beth Stephens, at 717-531-0003, extension 283395, or by email at hstephens1@psu.edu

Study Director: Zachary Simmons, MD, Department of Neurology, Penn State College of Medicine.

This research study has been approved by the Institutional Review Board, under federal regulations, at Penn State College of Medicine, Penn State Hershey Medical Center.

Special Support Group Meeting for Newly Diagnosed PALS at Robert Wood Johnson.

October’s support group meeting at Robert Wood Johnson University Hospital will be designed especially for PALS and families who have been diagnosed within the past 10 months. The goal of the special meeting will be to provide basic information and share resources which are of particular relevance to individuals at the beginning of the ALS journey. Information will be available on The ALS Association and its services as well as facts about ALS, basic home care, information of interest to Veterans, caregiving, and advocacy. If you have questions about clinical trials, the multi-disciplinary approach of ALS clinics, commonly used equipment and devices, and coping, this will be a safe place to get your questions answered by others who share your experiences and the professionals who partner with them.

NEW BRUNSWICK, NJ
October 17, 2009 1:00-3:00 PM
Support Group for the newly diagnosed.
Robert Wood Johnson University Hospital
Medical Education Building, Rm 108A
180 Somerset Street, Follow signs to meeting.

For more information, contact Debbie Schlossberg, Patient Services coordinator at schlossberg@als-ny.org.

Seeking Volunteers To Help With Website

At the ALS Association Greater New York Chapter we take pride in the work that we do to provide essential patient services for PALS (People with ALS) and helping to fund research. A part of our work is done through the web on our www.als-ny.org website and the various social networking sites we are on, including this blog. We work hard in order to keep uo to date on the latest technology so we can offer the best in communication on the web to our patients, families and friends of patients, caregivers and others. At times we rely on the genrosity of volunteers to help get over certain technological hurdles we can't handle in-house or to make the experience better for those visiting our sites. That help is invaluable and we thank everyone who helps make our online communications possible.

Below is a list of technical issues we need assistance with. They are probably very simple problems that many programmers or technical people can resolve quickly but we have, for one reason or another hit a brick wall in resolving. Any help fromt he community would be greatly appreciated. If you want to help either offer a helpful tip or solution (or a even a link to a webpage that provides information) in the comments section. Or you can email the Director of Communications, Lon S. Cohen directly at lcohen@als-ny.org. Thank you in advance for your help.

List of technical items we need help with:

1) Our www.als-ny.org website does not format properly in Safari. (We've gotten a few complaints about this.)

2) Help programming PHP so that we can quickly add new pages without having to insert the page name to be called up mannually.

3) Implementing Facebook Connect. We have it verified by Facebook and the connect button shows up in Firefox but not in IE.

4) The code snippet for Facebook Connect to show other friends on the website is not properly revealing those friends.

5) Need help from SEO specialist on best way to redirect an alternate domain name donated to us so to capitalize on Google search results.

Thanks.

iPod Touch/iPhone as a Communication Device

For those PALS (Patients with ALS) who have good hand function, but just have trouble speaking, this may be a solution for you.

If you already own an iPod Touch or iPhone, there are a host of applications that you can purchase to have your device speak out loud things that you type or select on a screen:

Proloquo2go: Fully featured communication software with over 7000 items. Good quality voices. www.proloquo2go.com. $189.99 on iTunes

Talk Assist: Speaks anything typed into the application. Phrases can be saved, and it also keeps a history of typed phrases. Free on iTunes

iSpeech – Text to Speech: Speaks anything typed into the application. Free on iTunes


Speak it! Text to Speech: Turns anything a user types into speech. Good voice synthesizer with very clear speech. $1.99 on iTunes

Talk to Me – Text to Speech: Speaks words as they are typed, and will speak whole phrases. $1.99 on iTunes

Locabulary: Speaks preprogrammed word/phrases. Free on iTunes


Small Talk to Aphasia: Designed for people with aphasia, Small Talk provides a vocabulary of pictures and videos that talk in a natural human voice. Free on iTunes


If you do not have an iPod Touch or iPhone, you may be interested in this option. You should go to a store that sells iPod Touches or iPhones to see how you like the touch screen before you purchase this device.

Other accessories that you may find helpful:








Ewest Super Mini Stereo Speaker








iMainGo 2 Handheld Speaker Case








If you have difficulty touching the screen, there is a stylus that you can purchase to help make selecting items easier called the Pogo Stylus.









There is a company that sells all of these components bundled
together to use the Proloquo2Go sotware.

Alternatively, you could purchase all of the pieces separately on your own. FYI – the Apple store has refurbished iPod Touches for a discount price.

These devices do not have the same capabilities as a high tech communication device, but for some patients, it can be a good solution.

If you have any assistive technology related questions, you can email Antoinette Verdone, our Assistive Technology Specialist at verdone@als-ny.org or call the office at 800-672-8857.

Click here to p rint this page as a PDF.

Neuralstem Receives FDA Approval To Begin First ALS Stem Cell Trial

Research News From National.

Neuralstem, Inc. announced that the U.S. Food and Drug Administration (FDA) has approved its Investigational New Drug (IND) application to commence a Phase I trial to treat Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s disease) with its spinal cord stem cells.

The Rockville, MD-based Neuralstem is the first company to commence a stem cell trial to treat ALS. The trial will study the safety of Neuralstem’s cells and the surgical procedures and devices required for multiple injections of Neuralstem’s cells directly into the grey matter of the spinal cord. The FDA’s approval represents a significant step toward delivering regenerative medicine directly to damaged neural cells in humans. ALS affects roughly 30,000 people in the U.S., with about 5,600 new diagnoses per year. ALS is a progressive fatal neurodegenerative disease that affects nerve cells in the brain, leading to the degeneration and death of the motor neurons in the spinal cord that control muscle movement.

“This is an extremely important trial that will test the stem cell approach in ALS in a rigorous way,” said Dr. Lucie Bruijn, senior vice president, Research and Development at The ALS Association. “This is the first stem cell trial in ALS and it will be conducted initially to study its safety for use in humans.”

Neuralstem CEO and President, Richard Garr, stated, “The beginning of our clinical trial program is a major step towards achieving Neuralstem’s goal of treating ALS, a fatal neurodegenerative disease for which currently there is no effective treatment or cure. While this trial aims to primarily establish safety and feasibility data in treating ALS patients, we also hope to be able to measure a slowing down of the ALS degenerative process. This trial will be headed by Dr. Eva L. Feldman, M.D., Ph.D., director of the University of Michigan Health System ALS Clinic and the Program for Neurology Research & Discovery, and Dr. Jonathan Glass, director of the Emory Neuromuscular Laboratory and Director of the Emory ALS Center, world-renowned for their study and treatment of ALS patients. We believe that there is no better team to conduct this study for us,” said Garr. Their participation is subject to formal IRB approval by their institutions.

“We are very excited about this clinical trial,” Feldman said. “This is a major advancement in what still could be a long road to a new and improved treatment for ALS. Feldman also directs the A. Alfred Taubman Medical Research Institute. “In work with animals, these spinal cord stem cells both protected at-risk motor neurons and made connections to the neurons controlling muscles. We don’t want to raise expectations unduly, but we believe these stem cells could produce similar results in patients with ALS,” Dr. Feldman concluded.

The ALS patients will be treated through spinal injections of its patented human neural stem cells.

This first trial, which will primarily evaluate safety of the cells and the surgery procedure, will ultimately consist of 18 ALS patients with varying degrees of the disease. The FDA has approved the first stage of the trial, which consists of 12 patients who will receive five-to-ten stem cell injections in the lumbar area of the spinal cord. The patients will be examined at regular intervals post-surgery, with final review of the data to come about 24 months later.

Neuralstem expects to conduct the trial at Emory University with Dr. Jonathan Glass, M.D., Director of the Emory Neuromuscular Laboratory and Director of the Emory ALS Center, as site Principal Investigator (PI) and with Dr. Nicholas Boulis, M. D. performing the neurosurgery. The overall PI for the ALS trial program is Dr. Eva Feldman, M.D., Ph.D., Director of the University of Michigan Health System ALS Clinic and the Program for Neurology Research & Discovery.

Neuralstem's patented technology enables, for the first time, the ability to produce neural stem cells of the human brain and spinal cord in commercial quantities, and the ability to control the differentiation of these cells into mature, physiologically relevant human neurons and glia. The company is targeting major central nervous system diseases including: Ischemic Spastic Paraplegia, Traumatic Spinal Cord Injury, Huntington’s disease and ALS. Neuralstem plans to initiate a Phase I clinical trial to treat ALS with its stem cells.

Pre-clinical work has shown Neuralstem’s cells to extend the life of rats with ALS (as reported the journal TRANSPLANTATION, October 16, 2006, in collaboration with Johns Hopkins University researchers), and also reversed paralysis in rats with Ischemic Spastic Paraplegia, (as reported in NEUROSCIENCE, June 29, 2007, in collaboration with researchers at University of California San Diego).

A Randomized Clinical Trial of Lithium Carbonate with Riluzole versus Placebo with Riluzole in ALS Shows No Benefit.

The ALS Association National News Update.

In February 2008, Dr. Francesco Fornai and colleagues at the University of Pisa, Italy, reported in a pilot study that lithium carbonate at dosages of 300-450 mg daily (titrated to a plasma level of 0.4-0.8 mEq/liter) combined with riluzole showed a large positive effect in people with ALS (Fornai, F., et al., Lithium delays progression of amyotrophic lateral sclerosis. PNAS, 2008.105(6): p. 2052-2057).

To further investigate lithium carbonate as a possible treatment for ALS, a randomized, blinded, multicenter trial of lithium carbonate with riluzole versus placebo with riluzole was conducted in people with ALS in the U.S. and Canada. The study used similar dosing to the Italian study. The study was conducted by the Northeast ALS (NEALS) and Canadian ALS (CALS) Consortia and was sponsored by the National Institute of Neurological Disorders and Stroke (NINDS) of the National Institutes of Health, The ALS Association and the ALS Society of Canada. This unique collaboration between investigators and funding organizations resulted in a novel study design and expeditious execution of the trial to efficiently answer a critically important clinical question. Study leaders included Drs. Swati Aggarwal, Lorne Zinman, Jeremy Shefner and Merit Cudkowicz.

An interim analysis was conducted after enrollment of the 84th subject and presented to the NINDS Data and Safety Monitoring Board in September 2009. Based on the interim analysis the trial was stopped for futility. This study did not show the same beneficial effect of lithium carbonate on the progression of ALS as the prior pilot study conducted in Italy.

Although the results are disappointing, it was very important for the ALS community to quickly and efficiently determine if the large benefit first observed for lithium could be replicated in a well controlled trial. With the ongoing assistance and commitment of patient volunteers, researchers can now focus on other promising therapeutics for patients with ALS.

Text-to-Speech Technology Reaches an Inflection Point

In a video on the New York Times website, our own Assistive Technology Specialist, Antoinette Verdone, spoke about augmentative communication devices to technology writer, Ashlee Vance.

You can see the video by clicking here.

Walk a mile in our shoes

By Ruth Louison

Disabilities are looked at differently by those afflicted, and by those who are affected, either physically or emotionally.

As a child I was taught not to stare at someone using a cane or in a wheelchair, and absolutely never to ask the person what’s wrong. But it’s hard not to stare, and although the temptation to ask questions is strong, the questions remained unspoken. I was also taught that no matter how tired I was, or how much I wanted a seat on any type of public transportation, a disabled person always came first.

Buses are now “disabled accessible” and are equipped to allow wheelchair-bound passengers to board. You can hear the deep sighs as the rest of the passengers are forced to wait several minutes for that individual to be helped onboard and his or her wheelchair to be secured. Occasionally passengers are instructed by the driver to give up their seats to accommodate the disabled party. Imagine that! Such an inconvenience – why do “those people” have to take public transportation? Why don’t they just call Access-A-Ride or take car service?

Ride any subway line at any time of day, but particularly during rush hour. Watch someone with any type of disability, permanent or otherwise – using a cane, or with an arm in a sling, or a brace on a leg – attempt to maintain their balance while perfectly healthy young people remain in their seats pretending not to see them. When they get off the train, listen for the comments when they don’t move quickly enough as they walk in front of someone in a hurry.

I must admit that prior to my diagnosis I would react negatively to these situations in my mind, but refrained from expressing my feelings aloud. There but for the grace of whatever grace there is, go I. However, if I saw a disabled person getting on the bus or train and I could get their attention I would get up and give them my seat.

Suddenly the shoe was on my own disabled foot. Before I purchased my cane, my gait was similar to that of someone who had spent the night being intimate with a pitcher of martinis. One day while crossing Kings Highway in Brooklyn – a very busy 4-lane street with heavy traffic – I was yelled at by someone in a car because I did not walk quickly enough and he had to wait for me to cross the street before he could make a left turn. “What are you, drunk?” he shouted at me. After a few more such incidents I realized that it would be prudent for me to use a cane when walking outdoors. When I was at home or at work I was fine, but the surfaces of sidewalks and paved streets seem to be a problem. So I bought a cane.

Now when I walk slowly across a busy intersection – because I have no choice but to walk slowly – the cane serves not only as support for me, but as a visual signal to drivers to allow me to reach safety before they make their turn. I always acknowledge their courtesy and patience with a wave and a “thank you.” For those ever-impatient drivers who insist upon nearly running me over there is a very different acknowledgement (but that is a topic for a different post).

What is it about the disabled that seems to bring out the worst in some and the best in others? How would the impatient driver feel if he or she were the one trying to get across the street before the “walk” signal begins flashing red? Why do wheelchairs produce negative reactions? Why is it that when I walk down the street using my cane people cannot look me in the face?

While it is true that we may have difficulty walking or maintaining our balance, or using our hands, or speaking, we are still people. We still love, and laugh, and cry. We still enjoy what we have always enjoyed – a baseball game, or a crossword puzzle, or a good book. We have loving families. We have dear friends. We have pets. We are no different from anyone else except that we need help with certain activities of daily living.

Yes, there are “handicapped only” spaces in parking lots (but not enough of them). We can obtain “handicapped” license plates and parking permits for our cars. Some subway stations have installed elevators to take us from the platform directly to the street. This is all very helpful and much appreciated. But what we need more than anything else is acceptance. Understand that we did not ask for this. In some cases the disability occurs at birth. I was hit by a car seven years ago and was fortunate only to have sustained an injury to my knee. How many people in wheelchairs have had similar accidents but with devastating results? In cases such as ours we are struck by an illness that has no cure. Accept the fact that we cannot change what has happened to us. If it takes us a little longer to cross a street, or maneuver our way up a staircase, or push a shopping cart in the super market, be patient. We are not doing this to aggravate you or to make you late for an appointment. We are attempting to maintain our dignity and independence for as long as we can.

My full name is Ruth Louison. I'm 63 years of age, and work as a Human Resource Generalist at a local City hospital. I'm married with one daughter, two stepchildren and five grandchildren. I am addicted to writing short fiction, baseball (sorry, but I'm not a Yankee fan), street rods and drag racing. I was diagnosed with Progressive Muscular Atrophy, which is the fraternal twin of ALS, in March of 2009.

FACTS YOU SHOULD KNOW ABOUT APPLYING FOR VA BENEFITS

- VA Benefits for PALS who served in the military and surviving spouses are NOT expiring. There is no deadline to apply.

- Claims submitted no later than 9/23/09 will be retroactive to 9/23/08, which is the date when the new benefit law was enacted.

- Claims submitted after 9/23/09 will then be retroactive to the day of claim submission.

WHY IS THIS IMPORTANT?

This is important because if you apply for benefits before the 9/23/09 cut-off date you are entitled to almost one whole year of back payments.

If you have further questions please contact patient services at (800)-672-8857 or patient_services@als-ny.org.

Derek Jeter Passed Gehrig's Yankee Hit Record

See end of this New York Times article for a statement of congratulations to Derek Jeter from Dorine Gordon, CEO of The ALS Association Greater New York Chapter.

Jeter Passes Gehrig as Yankees Hits Leader.

NEW YORK (AP) -- Puddles soaked the warning track and ponchos dotted the stands when Derek Jeter stepped to the plate in the third inning, hoping to give the soggy Yankee Stadium crowd a reason for showing up in all this rain...

Read the rest.

Deadline nears for survivors of vets with ALS to apply for retroactive benefits

The deadline for survivors of military veterans with ALS to apply for retroactive survivors benefits is September 23, 2009.

The following Q&A article first appeared in a Paralyzed Veterans of America Minnesota Chapter newsletter and contains helpful information on how widows and widowers can apply for benefits approved by the Department of Veterans Affairs on September 23, 2008. This article also can be viewed at http://www.mnpva.org/Newsletter/MayNewsletter2009.pdf.

National Service Officer’s Report – Tami Andersen
Survivor’s Benefits for Widows of Veterans Who Passed From ALS

Q. What are the benefits that a widow/widower can receive?

A. During an already difficult time for a widow/widower when their spouse passes away so quickly from Amyotrophic Lateral Sclerosis (ALS), there is some comfort to know that there are benefits from the Department of Veteran’s Affairs (VA) to assist them. When the primary or contributory reason for death is a service connected disability or disease; the widow/widower may be eligible for the Dependency and Indemnity Compensation or DIC for short, benefit. The DIC benefit is a monthly monetary award that is paid the first of every month for the previous month of benefit. Currently that amount is $1,154.00; with an additional monetary benefit for dependents and/or the need for aid and attendance. Two other benefits are the burial and plot benefits. The VA currently will pay $2,000.00 to a widow/widower as a burial benefit and $300.00 as a plot allowance benefit.

Q. What paperwork is needed to submit a claim for DIC and Burial/Plot Benefits?

A. VA form 21-534 “Application for Dependency and Indemnity Compensation, Death Pension and Accrued Benefits by a Surviving Spouse or Child” will need to be completed. Along with the VA form 21-534; a certified copy of the veteran’s DD214 (discharge document), a copy of the death certificate of the veteran stating the primary and contributory reasons for death, and a copy of the marriage certificate will need to be enclosed. A VA form 21-530 “Application for Burial Benefits” will need to be completed; along with the VA form 21-530; an itemized paid statement/invoice from the funeral home and a statement/invoice for the plot cost will need to be enclosed.

Q. What is the time frame for filing a claim?
A. The law for service connection of Amyotrophic Lateral Sclerosis (ALS) became effective September 23, 2008. Therefore, if a veteran passed away from ALS before September 23, 2008, the effective date is September 23, 2008. Otherwise, when a surviving spouse submits a claim within one year of veteran’s death; the claim will be effective the date of death. If the claim is submitted after the one year period of date of death, the claim will be effective the date of claim.

Q. How to get started?
A. Contact your local Paralyzed Veteran’s of America National Service Officer (NSO) to set up a meeting to complete the paperwork. The NSO will need to have a VA form 21-22, “Appointment of Veterans Service Organization as Claimant’s Representative” completed by the surviving spouse in order to submit and monitor the claim on your behalf. Once the claim has been submitted, the NSO will track it through the VA process to be sure it gets completed in a timely manner and is accurate. Contact your NSO at 612-970-5988 or 1-800-795-3609 with any questions throughout and after completion of the claim.

If I'm understanding this correctly, if Grandma was a Navy nurse during WW II and died many years later from ALS, Grandpa may be eligible for some benefits. If Uncle Joe served in Viet Nam and died from ALS many years later, then Aunt Jane, his widow, may be eligible for some help. If Cousin Mary served in Nebraska and died from ALS ten years ago, then her widower Cousin Mike may be eligible for benefits.

Widows and widowers of PALS who died many years ago should get their claims in by September 23 in order to maximize their benefits!

If I'm not understanding this correctly, I'll welcome some enlightenment.

This could be a huge help to many widows and widowers who may not have a clue that they are entitled to the benefit. Please help spread the word.

For a print version, please click here.