LINKS TO: Newsletter Archives The ALS Association Website Donate

Issue 9 January 2006 Newsletter Spotlight ALSA Helps Actor James Woods Play Character with ALS on ‘ER’   New Medicare Prescription Drug Benefit Open Enrollment Continues until May 15   Walk to D’Feet ALS® Donations Hit an All-Time High in 2005     Healthcare Resources for Up to 50,000 Online Users   Specialty Cookbook Offers a Taste of Something Good for PALS   ALSA National Office and Chapter Recognize the Many Contributions of Its First Chairman   The ALS Association is the only national not-for-profit health organization dedicated solely to the fight against amyotrophic lateral sclerosis. Through research, patient services, public policy and education, The ALS Association is dedicated to finding a cure for and improve living with Lou Gehrig’s disease.  Click here to contact your local chapter. ALSA Helps Actor James Woods Play Character with ALS on ‘ER’ Multiple award-winning actor James Woods ("Casino," "Nixon") will star as a person with ALS on NBC's critically-acclaimed "ER." The episode, titled “Body and Soul,” is entirely devoted to Woods’ character and is scheduled to air on Thursday, February 2 (check local listings).   ALSA helped actor James Woods prepare for his starring role as a college professor with ALS on the February 2 episode of NBC’s “ER." Photo © 2005 Warner Bros. Entertainment Inc. “The ALS Association is very grateful to the producers of “ER” for their decision to devote an entire episode of the show to ALS. We also would like to thank the cast and crew for treating this difficult subject with the sensitivity it deserves,” said ALSA President and CEO Gary Leo. “Lastly, we are fortunate that “ER” chose James Woods to play a character with ALS. Obviously the considerable amount of time he spent researching the disease helped contribute to an outstanding performance. He is an actor who takes his craft seriously.” The technical adviser for the episode was former vice president of ALSA’s Patient Services Department, Mary Lyon, who believes the show does an excellent job of exploring the impacts of ALS and is superior to many previous television attempts. “The show will take it a step further to raise awareness about exactly how ALS affects individuals,” Lyon said. “It is more than a 30 second explanation. Instead of people saying, ‘I always wondered what ALS was,’ the audience will see first-hand what the disease does to the human body and to the human spirit.” To gain a better understanding of ALS, before filming began, Woods, who plays Dr. Nate Lennox, once a professor of Dr. Abby Lockhart's (Maura Tierney), as well as the episode’s writer, Joe Sachs and the director, Paul McCrane, met with six people with ALS who receive care from ALSA’s Greater Los Angeles, Orange County and Arizona chapters.     The final script was also based on ALS videos which ALSA provided and the input from Lyon, who was present on the set for eight 12-hour days. “It is going to be an exciting and provocative show,” Lyon said. “It was very well directed and brilliantly acted. I found it to be spellbinding in many of the scenes with Mr. Woods. It was a beautiful script, very realistic and authentic.” From the outset, including when Lyon attended the show’s concept meeting, and during the meeting with the ALS patients at Warner Brothers headquarters in Burbank, she said she knew Woods and the people from “ER” were on the right track. And the key to getting things “right” included the use of the correct technology.   Eye Response Technologies in Virginia and Permobil in Tennessee provided the equipment that Woods uses in this “ER” episode.  Eye Response Technologies’ innovative system allows Woods’ character to communicate with other actors in the show via a speech generation device that follows eye movements, while Permobil’s powered wheelchair, the C500 Corpus model, gave the actor mobility.  “In the seven and one-half years that I have been working with the ALS community, I felt it was the most important experience that I ever had. The writer, director and actor did a lot of homework. They were committed to getting things right.” Lyon also believes that people with ALS who watch the show will be able to relate to Woods’ character. “Everyone sort of responds to ALS individually, just as everyone is a different person. Not everyone will have the same reaction as the character does. Some people will live their lives differently. The choices he makes and the things that happen to him are very believable and is the experience for many people." Woods, the son of a US Intelligence officer, completed a degree in political science at the Massachusetts Institute of Technology. Upon completion, he headed off to New York to pursue an acting career. After appearing in a number of theater productions, Woods landed his first television role in "All the Way Home" and followed that with supporting roles in "The Way We Were" and "The Choirboys." However, it was Woods’ bold performance in "The Onion Field" that brought him serious attention. Woods followed up with roles in "The Black Marble," "Videodrome," "Once Upon a Time in America" and scored a best actor Academy Award nomination in Oliver Stone's "Salvador." During the 1990's Woods' credits include "Casino," "Nixon" and "Ghosts of Mississippi." Woods has further expanded his work to encompass animated productions including "Hercules" and "Stuart Little 2." His recent live-action credits include "The Virgin Suicides," "Riding in Cars with Boys," "Any Given Sunday" and the comedy-horror spoof "Scary Movie 2." Currently in its twelfth season, "ER" is executive-produced by Michael Crichton, John Wells, Christopher Chulack, R. Scott Gemmill and David Zabel. The drama is a production of Constant Productions and Amblin Television in association with Warner Brothers Television Production, Inc. TOP New Medicare Prescription Drug Benefit Open Enrollment Continues until May 15 On January 1, 2006, for the first time in the program’s history, Medicare began providing prescription drug coverage. Enrollment in the new prescription drug benefit, also known as Medicare Part D, is voluntary, and the open enrollment period will continue until May 15, 2006. “For people with ALS who are eligible for Medicare, the new benefit may provide significant savings over their current drug costs, especially if they currently do not have coverage,” said Pat Wildman, ALSA’s Director of Federal Advocacy Outreach. “People with limited resources may realize even greater savings as they may qualify for additional assistance from Medicare including reduced monthly premiums and low co-payments." ALSA strongly supported the drug benefit leading up to Congressional passage in 2003 and since that time the Advocacy Department has worked closely with the Centers for Medicare and Medicaid Services to make sure Rilutek©, the only drug approved by the Food and Drug Administration to treat ALS, would be covered by Medicare prescription drug plans offered under the benefit. Following ALSA’s advocacy efforts, the drug was included on an example of a model list that prescription drug plans can follow when creating their formularies, or lists of covered drugs. “While the benefit may provide savings, there are many options available to PALS, including keeping their current drug coverage,” Wildman said. “So it is important that PALS and their caregivers and families take the time to review their options and make the choices that are most appropriate for their specific needs.”  Wildman said that if someone currently has prescription coverage, they should compare that coverage with the coverage that is available through Medicare before deciding to enroll. However, those who do not enroll during the initial enrollment period (November 15, 2005-May 15, 2006) may have to pay a penalty (1 percent premium increase for each month a person waited to enroll). For example, enrolling six months late would increase monthly premiums by 6 percent. Enrolling 2-1/2 years late would increase monthly premiums by 30 percent. These premium increases would be permanent and would continue for as long as someone is enrolled in the prescription drug benefit.  However, if a person’s current prescription coverage is deemed to be equal to or better than Medicare’s (referred to as “creditable” coverage), they will not have to pay a penalty if they choose not to enroll in the Medicare prescription drug benefit at this time. In fact, health plans and employers providing coverage were required to provide notice of “creditable” coverage to people by November 15, 2005 if their coverage was equal to or better than Medicare. People who received this notice should keep it on file. And if they didn’t receive it, or misplaced it, they have a right to request it from their health plan.  ALSA’s Advocacy Department has created a special page on The Association’s website at www.alsa.org that provides a wealth of information about the drug benefit. Located on ALSA’s home page under Public Policy, the page includes such sections as: the basics of the plan, prescription drug toolkits, the availability of regional drug plans, and selecting a prescription drug plan. There also are sections on frequently asked questions and answers, important dates and deadlines, Medicare training and assistance, and publications and fact sheets. For additional information, call Pat Wildman toll-free at (877) 444-ALSA or send him an e-mail at pwildman@alsa-national.org. TOP Walk to D’Feet ALS® Donations Hit an All-Time High in 2005 The year 2005 was the most prosperous in the history of The ALS Association’s Walk to D’Feet ALS®.   The ALSA Louisiana Chapter’s first Walk to D’Feet ALS® on October 29 was a major success despite devastating hurricanes that hit the region several months earlier. More than 500 people, who formed 33 teams, walked on the newly paved Mississippi levee. ALSA’s national signature fundraising event came in at the finishing line with $10 million, the most amount of money donors have given to the Walk in its five-year history.   This means that ALSA’s chapters will have more funds to purchase equipment to loan, including walkers, canes, wheelchairs and adaptive utensils, alternative augmentative communications devices, and funding also will finance support groups and education services.      Despite the country’s preoccupation with hurricane relief efforts in the Gulf Coast states, thousands of ALSA chapter staff and volunteers throughout the United States rallied to the cause, an effort that resulted in the eclipse of the previous all-time Walk fundraising mark of $8.7 million set in 2004. IN 2005, ALSA chapters held the event in 150 locations across the country and attracted close to 100,000 walkers, both of which are new thresholds. “We went the extra mile to make sure we remained on the radar screen of new and longtime donors who understandingly wanted their generosity to reach to the scores of people who lost their homes and even members of their own families,” said L. Ashton Chase, ALSA’s senior director of national signature events. The Walk has raised $40 million since its premiere as a pilot project in 2000 when 14 ALSA chapters sponsored 14 Walks. TOP   ALSA Partners with ZivaGuide to Provide Healthcare Resources for Up to 50,000 Online Users By Stephanie Dufner, ALSA Communications Coordinator The ALS Association has signed an agreement with ZivaContinuum, LLC, parent company of the web-based resource ZivaGuide™, to offer free healthcare information to ALSA’s various audiences, including the organization’s staff and chapters, people with ALS (PALS) and their families, website visitors, donors as well as the general public.  Up to 50,000 people can register with the site from January 1 through December 31, 2006 for a two-year subscription period at no cost to the registrant. Once the first year of their online subscription ends, users have 60 days to renew their subscription for a second year of free access to the website. ALSA’s affiliates can access ZivaGuide’s link through www.zivaguide.com or the ALSA website at www.alsa.org. The Ziva website offers innovative, comprehensive and unbiased health-related knowledge to its users. Through ZivaGuide, subscribers create and can update personal profiles for themselves or friends and family members that allow the website to answer inquiries about medical conditions, medications and healthcare planning.  Functional tools also give ZivaGuide users personalized and customized information on local physicians, providers and community resources and access to scholastic medical publications. “ALSA is very pleased to be partnering with ZivaGuide to provide this unique healthcare resource to the ALS community,” said Sharon Matland, vice president of patient services for ALSA. “We believe this readily accessible and easy-to-use health information database is an empowering asset for people in answering inquiries and locating required resources. The capability of establishing a personal account will provide users with a customized tool for healthcare planning.” ZivaGuide is proud to welcome ALSA into our growing community of healthcare professionals, caregivers and individuals,” stated Tracy Callahan, Chief Operations Officer of ZivaGuide. “We look forward to assisting ALSA as they work to enhance the lives of the ALS community. Together, with ALSA, we will continue to make ZivaGuide a leader in healthcare information, resources and services.” TOP Specialty Cookbook Offers a Taste of Something Good for PALS By Stephanie Dufner, ALSA Communications Coordinator Culinary aficionados have undoubtedly heard of Nigella Lawson, Giada De Laurentiis and Rachael Ray, cooks-turned-authors whose works specialize in healthy eating or easy-to-prepare dishes. Elayne Achilles, executive director of The ALS Association’s Arizona Chapter, can also boast she has joined the ranks of cookbook writers. A recipe both PALS and their families will enjoy --Elayne’s Shartlesville Pumpkin Soufflé which is featured in “The Dysphagia Cookbook.” The Dysphagia Cookbook (Pronounced dis-‘fā-jē ә), Achilles’ handy compendium of soups, sauces and desserts, contains healthy and visually appealing recipes that will interest those who have troubles swallowing, including people with neuromuscular diseases such as ALS. Those who experience dysphagia don’t have to sacrifice taste, nutrition or texture for visually bland foods. For instance, users can puree Achilles’ “Bangkok Butternut Squash Soup,” a piquant concoction that contains Thai red curry paste, small butternut squash and minced fresh ginger. “This makes a nice, thick soup with wonderful Thai spices,” Achilles noted. A professor emeritus who taught Music Education at Arizona State University for 18 years, Achilles completed ASU’s Nonprofit Management Institute in the fall of 2004. Achilles’ late partner, Jackie Boswell, a musician and professor, inspired her to write the cookbook in the summer of 2002 after doctors diagnosed Boswell with ALS in December 2000.  Shartlesville Pumpkin Souffle Ingredients 1 15-ounce can pumpkin 4  eggs, separated 1cup sugar ½ teaspoon salt ½ teaspoon cinnamon Dash clove, allspice and nutmeg 1/3 cup cream ¼ cup butter, melted ¼ cup whiskey (Elayne recommends Maker’s Mark) 1 teaspoon cornstarch Whipped cream Preparation Preheat the oven to 450○. In a large bowl beat the pumpkin, egg yolks, sugar, salt and spices for 5 minutes.  Add the cream, butter, and whiskey and mix well.  In another bowl beat the egg whites until stiff peaks form.  Sprinkle the cornstarch over the egg whites and fold into the pumpkin mixture.  Pour into 6 custard cups and bake for 10 minutes.  Reduce the oven temperature to 350○ and bake for about 30 more minutes, until the mixture is set.  Top with whipped cream.  Serves 6.  An excerpt from The Dysphagia Cookbook, Copyright 2004 by Elayne Achilles Published by Cumberland House Publishing A nutritionist who worked with Achilles and Boswell at The Banner Good Samaritan ALS Clinic in Arizona also provided Achilles with the extra push to publish her dishes, most of which are original creations.  “I modified food for Jackie on a regular basis, but if it weren’t for the nutritionist, I never would have thought about putting the book together,” Achilles admitted.  Both people with ALS (PALS) and their families have enthusiastically responded to Achilles’ cookbook.  “I’ve gotten good feedback from patients,” said the former instructor. “People from various parts of the country have offered me differing suggestions, based on their regional styles.  This cookbook has an international flavor, but I tried to offer a little something in every category.” Achilles has always enjoyed cooking and entertaining, and she has participated in myriad cooking contests.  Variations of her award-winning lamb plate from the Lambgrowers Association Cook-Off in Maricopa (AZ) County and a pumpkin pie (in a soufflé form) presented at an Arizona Republic contest pop up in The Dysphagia Cookbook. Will this culinary artist complete a follow-up book to her first cooking guide? At this point, Achilles wants to work on another subject—advice she has garnered from people with ALS and their caregivers on living with ALS.  “These are pretty much practical tips queried from people around the country,” Achilles said. You can purchase The Dysphagia Cookbook through The ALS Association’s web site at the following link: http://www.alsa.org/resources/reading.cfm. TOP ALSA National Office and Chapter Recognize the Many Contributions of Its First Chairman Lawrence R. Barnett, the founding chairman of The ALS Association, was honored by the National Office and ALSA’s Greater Los Angeles Chapter for his pioneering leadership and generosity during more than three decades of commitment to finding a cure for Lou Gehrig’s disease. (top photos) ALSA’s “Circle of Life” honor was presented to Barnett by (L) ALSA National Board of Trustees Chairman Allen Finkelstein and (R) ALSA President and CEO Gary Leo for contributions in excess of $1 million. ALSA’s Greater Los Angeles Chapter presented Lawrence R. Barnett with the “Commitment to a Cure Award.” (L-R) ALSA National Board Trustee Phyllis Brourman, Barnett, Greater Los Angeles Chapter Board Vice President Kathleen Rasmussen, Barnett’s wife Isabel and Greater Los Angeles Chapter Executive Director Fred Fisher. “I’ve always felt like I needed to help humanity as much as I can. And we are fortunate enough to give back to the community and make a difference,” said Barnett, known as the “Grandfather of The ALS Association.” “Even as I child, I wanted to help others.” TOP Questions or comments? E-mail webmaster@alsa.org or call 800-782-4747.