2015 A SEASON OF HOPE S P RING
Issue 5
INSIDE:
Fundraising Success 10 / SGD Changes: What They Mean 16 / Care Services Holiday Party 32 / Bob Is My Hero 41
The Teacher JUANITA RICHTER’S STORY PA G E 24
It’s Time
We Stop Calling It Lou Gehrig’s Disease. IT’S TOO LIMITING. IT’S TOO OUTDATED. AND IT’S TOO POSITIVE.
The thing is, ALS is particularly cruel. It shuts down most every part of the body— except the brain, which remains unscathed to ponder how such a brutal disease can continue to be largely ignored and underfunded. But this publication isn’t about that. As the name implies, it’s about hope. Hope that anyone afflicted with ALS can find some peace and perspective in the stories of others facing the same struggles. Hope that family members can also take some comfort, knowing they’re not the only ones dealing with the frustrations of the disease. Hope that our donors and sponsors can see that their generous efforts are not in vain. Hope that those who are unfamiliar with ALS remain untouched, but not uninformed. And hope that one day, through research, we’ll turn the tables on ALS so that no one will ever again have to endure its ravages.
Until then, we offer this HopeLine of support.
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Table Of CONTENTS FEATURES
Fundraising Success Begets Fundraising Success PAGE
10
ALS — An Overview, It’s Time
02
Table Of Contents
03
Board Of Directors/Staff Listing
04
Letter From Director
05
Upcoming Events
06
Research Updates
10
Care Services Update
14
Support Groups & Meetings
22
Cover Story
24
In Our Community
36
Contributions & Memorials
45
In Memoriams
46
Care Services Holiday Party PAGE
32 WHERE TO FIND US: alsawi.org vsals.org Facebook.com/ALSAWisconsin Twitter.com/ALSAWisconsin YouTube.com/User/ALSAWisconsin
Bob Is My Hero PAGE
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HopeLine is published quarterly by The ALS Association Inc. Wisconsin Chapter 3333 N Mayfair Road, Suite 213 Wauwatosa, WI 53222 P: 262.784.5257
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Without the tireless efforts of those listed here, there would be no HopeLine. No ALS fundraising events. And no unified effort to spread ALS awareness BOARD/STAFF throughout Wisconsin. We are immensely thankful for the time, talents and passion each selflessly puts toward the cause.
BOARD OF DIRECTORS Thomas Kettler Kathryn A. Keppel Joanne Blaesing John Schleicher Benjamin Becker Holly Blake Mary Brennan Druml Laura Hinrichsen Jan Kaufman Mary Beth Schlecht STAFF Executive Director: Melanie Roach-Bekos Special Events Manager: Susie Reed Marketing Coordinator: Natalie Jansky Director of Care Services: Lori Banker-Horner Care Services Coordinator: Robin Stanczyk Care Services Assistant: Janet Gauger Care Services Coordinator: Mary DeFrain-Jones Care Services Coordinator: Carolynne Younk Care Services Coordinator: Diane Fergot
LEADERSHIP TEAM Leslie Barbi Scott Bucher Colleen Dougherty Curt Downes Mary Druml Shannon Egan Jim Eutizzi Dave Hanneken Brad Hicks Rachel Koebel Candace Lesak Joe Lewis Meg McKenzie Palen Alison Murphy Dan O’Donnell Jim Palmer Signe Redner Tim & Trickett Wendler Teddi Zeman
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Executive Director:
Melanie Roach-Bekos
For more information, please contact us at 414-831-3993.
D
ear Friends, Happy 2015! The New Year signals new beginnings, new resolve and new hope. Thank you for your ongoing support as we search for new ways to combat ALS and to promote services and resources for our patients and families.
As promised, we’ve gone digital with the HopeLine. The ALS Wisconsin Chapter would like to thank Traction Factory for their ongoing partnership and successful efforts at increasing ALS awareness on every level. Their marketing and advertising expertise has had a huge impact in our fight against ALS. Together, we look forward to sharing new partnerships and programs with you in 2015. My gratitude is immense for each and every person, corporation and foundation who supports us and the ALS Wisconsin Chapter Board of Directors. I’m proud to share that the ALS Leadership Team is now beginning its second year of working together to reach our full potential in the corporate world. I gratefully thank my colleagues and leaders in our community who served as pioneers when this concept was created and presented to them. Each person on this team has had an active role in bringing this idea to life. In addition to our new digital look, we have many projects in the works for 2015. This year’s Evening of Hope is scheduled for March 7th. Having raised over 3.5 million dollars for ALS research since its inception, it’s our signature event. Please consider a table of family, friends and co-workers. We promise a lovely evening. Tickets can be purchased online at: beatals.org.
Our online Evening of Hope pre-auction begins on March 1, 2015. You can preview this year’s amazing, one-of-a-kind items at: http://bidpal.net/2015eveningofhope. The following 2015 Walk/Run to Defeat ALS dates have been confirmed: Janesville: May 9 Appleton: September 19 Platteville: September 26 Milwaukee: October 11 Although these annual events seem a long way off, now’s the time to register your team at: walktodefeatals.org. The Walks are the Chapter’s most efficient money and awareness raisers, also serving to honor current and past ALS patients. Visit alsawi.org or contact the Chapter’s office with questions or comments. We’re proud to announce we’ve partnered with the Milwaukee Admirals for an inaugural event: Stickin’ It to ALS, to be held on Friday, April 17th. It will be followed by Hal’s Harley-Davidson’s annual Toast to Hope, on Saturday, April 18th. Then, the summer will bring our 4th Annual Chasin’ A Cure tailgate on July 17, 2015. Please mark your calendars and watch for further details. I also respectfully ask that you support the Community/Family events that are listed in this issue. Each has become part of the growing family of efforts that will one day beat ALS. As a Chapter, we’re able to effectively provide services thanks to the individuals and companies who dedicate their time, energies and resources to make these events happen. We’re extremely excited about the coming year and are hoping to continue the momentum of last year’s Ice Bucket Challenge. We also hope to have good news to share from the research projects that are being funded by the Ice Bucket Challenge donations. In addition to new and continuing programs, events and materials, we’ll also be advocating for better health care provisions and coverage for people with ALS. Lastly, I would like to thank Team Gleason and Morgan Burnett for all they do to keep hope alive. The bar was raised considerably in 2014, and here’s to raising it even higher in 2015! Sincerely,
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Upcoming EVENTS 2015 ALSA-WI EVENTS
2015 COMMUNITY EVENTS
Evening of Hope March 7, 2015 Hyatt Regency Milwaukee Natalie Jansky: natalie@alsawi.org / 414.831.3993 / beatals.org
Cheese Freeze Competition Rally // February 21, 2015 Wisconsin Dells A time-speed-distance (TSD) navigation event Aaron Guell: cheesewheelinc@gmail.com / 920.539.0767
Stickin’ It To ALS April 17, 2015 Milwaukee Admirals, BMO Bradley Center Natalie Jansky: natalie@alsawi.org / 414.831.3993 Chasin’ A Cure Tailgate July 17, 2015 Milwaukee Brewers, Miller Park Natalie Jansky: natalie@alsawi.org / 414.831.3993 SAVE THE DATE! The ALS Association Wisconsin Chapter’s Annual ALS Care & Research Symposium May 2, 2015 Sheraton Milwaukee Brookfield Hotel Janet Gauger: janet@alsawi.org / 262.784.5257 Watch for more information to come via email, website and mail.
Banding Together // March 7, 2015 Eclipse Center Terry Russell: terry.russell@cciwi.com / 608.207.0136 Toast to Hope // April 18, 2015 Hal’s Harley-Davidson Carrie Schmidt: carrie.schmidt@halshd.com / 262.814.8684 ALS Poker Run // August 15, 2015 Straight 8 Bar Sandy Osterloh: sandyosterloh@yahoo.com Rockin’ For A Cure // April 25, 2015, Sheraton Madison Hotel Mike Anello: manello@mcw.edu / 414.955.2802 Koebel Open // May 30, 2015 Meadowbrook Country Club Rachel Torgerson: rachelt00@yahoo.com / 414.688.5338 Swan City Car Show // June 21, 2015 Beaver Dam All make/model Car, Truck, and Motorcycle Show Aaron Guell: cheesewheelinc@gmail.com / 920.539.0767 WAC Chips In // August 21, 2015 Ironwood Golf Course Randy Foss: rfoss@thewac.com / 414.427.6500 Ice Cream Ride for ALS // August 23, 2015 Burlington Deb Heinzelmann: debheinzel3@gmail.com / 262.210.2568 Team Bernette Manitowoc Walk // August 29, 2015 Manitowoc tinakocourek@gmail.com / 920.242.7298
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I l l u s t rat io n by H Y E S U L E E
WOULD YOU JOIN US FOR A MAGICAL EVENING TO HELP FIND IT? The reality is, a cure for ALS isn’t going to come from wishes. Or from a lucky star. It can only come from research. And research only comes from funding. Your attendance at the Evening of Hope will help provide that funding. There’s no other event like it, anywhere out there.
The Evening of Hope BLACK TIE DINNER & DANCE S AT U R D A Y • M A R C H 7 , 2 0 1 5 • 5 : 3 0 PM H YAT T R E G E N C Y • M I LWA U K E E , W I To reserve your tickets or for more information , call ( 4 14) 83 1 - 3993 , email info@alsawi.org or visit B eatA LS.org
Research UPDATES January 8, 2015
At ALS Association, Fundraising Success Begets Fundraising Success Revenue from the ALS Association’s fundraising walks, staged across the country by its 38 chapters, brought in $32-million last year, up from $22-million in 2013. By Megan O’Neil Call it the ice-bucket challenge effect. The social media-fueled phenomenon, which exploded last year across the Facebook pages and Instagram accounts of Microsoft founder Bill Gates, fashion designer Donatella Versace, and countless others is rippling through traditional ALS Association events and general fundraising, according to Lance Slaughter, chief chapter relations and development officer. Revenue from the federated charity’s fundraising walks, staged across the country by its 38 chapters, brought in $32-million last year, up from $22-million in 2013. The end-of-year fundraising drive also saw a threefold increase. From December 1 to December 28, the nonprofit logged 44,000 donations totaling $4.8-million. During the same period in 2013, except for a $5.5-million estate gift, the group received 9,618 gifts totaling $1.6-million, Mr. Slaughter says.
The ice-bucket challenge drove an estimated $220-million in donations globally in 2014, $115-million to the ALS Association. It will be weeks before the nonprofit has a tally of its total 2014 fundraising numbers, emphasizes Mr. Slaughter. The ALS Association is still counting gifts from the last few days of the all-important fundraising month of December. At the national level, 60 percent of revenue comes in the last quarter, which closes January 31. And the association chapters have another month to submit their numbers. In a typical year, the fundraising spring and fall walks account for about 50 percent of chapters’ total fundraising, Mr. Slaughter says. At the start of 2014, the nonprofit had already set a goal of increasing walk revenue to about $25-million,, and as the spring period wrapped up, he felt confident things were on track. Then the ice-bucket challenge went viral over the summer, and the fall walk season took off. In places like Pittsburgh, chapters reported 100 percent increases in participation, ALS Association officials say. While the group is still analyzing data from recent months, it’s clear that many donors returned to the cause after time away, Mr. Slaughter says. During the peak of the ice-bucket challenge, he and many colleagues worked seven days a week, 16 hours a day. The national office was like a 24/7 telethon, he says.
Courtesy of the ALS Association Wisconsin Chapter
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“The ALS community has been waiting for this moment to have this disease reach the level of public recognition that [other diseases] have had,” says Mr. Slaughter, who lost an uncle to ALS.
Continued
At ALS Association, Fundraising Success Begets Fundraising Success The nonprofit, which is dedicated to advancing long-term treatments and discovering a cure for the progressive neurodegenerative disease (often referred to as Lou Gehrig’s Disease), has already announced a tripling of its investments in research, with efforts focused on six programs and efforts. It is also increasing funding for its Certified Treatment Centers of Excellence, which provide care and support services for sick individuals. Veteran fundraising consultant Roger Craver says he is not surprised the charity saw an uptick in its general fundraising. He says the staff at the ALS Association did a crack job navigating a tidal wave of money and publicity that would have swamped many organizations. The group did “an exceptional” job following up with the donors who made those initial ice-bucket gifts, Mr. Craver says. He himself made a gift, and his donation was followed promptly by a thank-you note with details of how the nonprofit was moving forward with the money. “There was a lot of pressure on them to say, ‘We are spending this money immediately on x, y, and z, and they resisted doing that,” Mr. Craver says. “They told the donors, ‘Here is the planning process and the process for spending this money effectively.’ “ In an October interview with Chronicle contributor Tony Martignetti, ALS Association President Barbara Newhouse was clearly sensitive to the intense spotlight on the nonprofit now. She and her colleagues were trying to quickly seize opportunities created by the ice-bucket challenge, she said, but did not hire lots of new staff, which could have been viewed unfavorably. “It is not our intention to turn our organization into a top-heavy organization because of these dollars,” Ms. Newhouse said. “That is not at all where we are headed. We want to use these dollars to find an effective treatment and ultimately a cure.” One of the central tasks for staff is to determine the “new normal” for the ALS Association, say Ms. Newhouse and Mr. Slaughter. They are on the verge of adding one new chapter. And while the group will adjust fundraising goals, it also recognizes that the ice-bucket challenge was an anomaly. “What is clear, what we hope is irreversible, is the fact that there is a profound understanding and a level of concern in the public that continues to generate more support,” Mr. Slaughter said. REFERENCES O’Neil, M. (2015). At ALS Association, Fundraising Success Begets Fundraising Success. [online] The Chronicle of Philanthropy. Available at: http://philanthropy.com/article/At-ALS-Association/151085/?cid=pt&utm_source=pt&utm_ medium=en [Accessed 8 Jan. 2015].
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Research UPDATES From Will Hubben
Ten Tips For Newly-Diagnosed ALS Patients Editor’s Note: Following is an “FYI” article from The ALS National Association that includes invaluable tips for individuals newly diagnosed. We wanted to share this article with all of you. It is available to print and download through the National website at www.alsa.org.
Will Hubben was diagnosed with Lou Gehrig’s disease in July 1998 and died in May 2004. In November 2000, Will created The ALS Research Digest, an electronic newsletter designed to provide information about the disease to the ALS community. Shortly before he passed away, Will provided ALSA with a number of coping devices he used that helped him immeasurably. In his tips for newly-diagnosed ALS patients, Will shared what helped him along the way and some advice that he wished he had followed sooner rather than later. Be compassionate to yourself. If you are like me, your first reaction to being told you may have ALS is shock and fear. We all go through wild emotional swings when we hear such dreadful news. Allow yourself to go through denial, grief, anger, and whatever else you feel without criticizing yourself for it. It’s natural and necessary for you to experience powerful emotions. Many feelings will arise again and again as ALS progresses. This will pass, and being gentle with yourself is a big help. Reach out to family and friends. Many people may want to help and not know how. Talking openly to a family member or friend about your situation will help both of you cope. Ask for assistance with preparing meals, running errands, doing household chores, or ask to be taken to the movies. Building a support network will help you and your primary caregiver. Also, this allows family and friends to get involved.
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Learn about ALS. Knowledge is power. ALS tends to make people feel powerless. Learning all you can about the disease, about supplements and drugs that might slow progression, and about current research, can help empower you. Sharing what you learn will help raise awareness about ALS and the need for more research money.
Continued
Ten Tips For Newly-Diagnosed ALS Patients Do everything you can for your health. Improve your diet, quit smoking, take up yoga and/or meditation, practice positive visualization, get plenty of sleep, and work with your doctor to develop your own regimen of helpful vitamins. Every little effort will help you, both physically and mentally. Take charge of your treatment. Pick your health care providers carefully. Remember, they work for you. Talk to your primary care provider and your neurologist about any vitamins and supplements you may want to take. Ask lots of questions. If they don’t patiently and respectfully answer (or research) all of your questions, fire them and find someone else. Don’t be passive about your treatment options. You are always in charge. Develop a relationship with a major ALS center. Centers and clinics associated with The ALS Association have a lot of experience with ALS. They take a multidisciplinary approach with ALS patients and can be helpful at every stage of the disease. The ALS clinical team is there every step of the way to provide expert medical care to people living with ALS. A list of ALS centers and clinics affiliated with The ALS Association can be found at http://www.alsa.org/community/centers.cfm. Do things you have always wanted to do. Take that trip to Europe, spend more time with your family, go skydiving, write a book, or raft the Grand Canyon. Whatever it is, go ahead and do it. In a few months, you may no longer be able to do these activities. Find ways to help others. One of the best ways you can help yourself is to help other people with ALS. Consider raising money for research, joining advocacy efforts, volunteering for clinical trials, attending support groups, and reaching out to others who need emotional support. Giving to others enriches your life as well as theirs. Practice hopeful, positive thinking. Maintaining a positive attitude in the midst of trying circumstances takes practice, but it’s worth it. Not only is your moment-to-moment experience improved, but experts agree that a positive attitude can improve your body’s resistance to disease. Remaining hopeful helps me to enjoy my life, in each moment. In addition, a lot of promising research is being conducted in many different areas of investigation. Remember, a breakthrough could happen at any time. Stay ahead of the curve. Get a wheelchair when walking difficulties begin, even though you can still walk. Get a feeding tube before you lose weight. Begin using augmentative communication aids before you need them. Get respiratory support by using a BiPAP at night as soon as possible. By taking these and other steps early, you remain in control. No one with this disease regrets doing these things early; many regret waiting too long. Wisconsin Chapter Care Services staff members often are asked, “What are the first steps I should take once I am diagnosed?” The first step is to get registered with your local ALS Chapter and the National ALS Association so you can be assured that you are receiving all the resources and support available to you. You can register by phone or by website at alsawi.org and alsa.org. If you know someone who has been diagnosed and you are not sure how to help, please don’t hesitate to contact the Wisconsin Chapter at 262.784.5257. We are here to help.
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Director of Care Services:
Lori Banker-Horner & Team
Happy New Year! This is a total cliché but I have to say that it’s hard to believe that it’s already 2015! 2014 was a year of challenge, change and unbelievable hope and amazement. The Ice Bucket Challenge changed ALS forever. It did not change the disease itself but it put ALS on the lips of individuals young and old, and raised awareness in a way that no one could ever have planned or predicted. I believe that 2015 will bring more hope than ever, as we move forward to a better understanding of ALS, a treatment and ultimately a CURE. Our Care Services Team is honored to be walking hand in hand with all of you as we work toward that goal. Awareness is the bottom line for everything we do in the Chapter—from Care Services to Fundraising, supporting Research to Public Policy. Nothing can happen without increasing awareness of ALS and the devastation it brings to not only the individual, but their loved ones and family as well. Raising awareness is a primary goal of everyone associated with the Chapter, and the Care Services staff is ready and willing to talk to any individual, business, organization or facility and staff about ALS.
The Care Services team regularly conducts educational programs and in-service presentations to ensure that those caring for our Chapter members truly understand ALS and understand that we are a resource to them. This starts with the connection of the individual diagnosed with ALS. The Care Services staff is always available to answer questions, discuss issues and concerns and simply provide an ear or a shoulder to lean on. These interactions can occur wherever you’re most comfortable and able—over the phone, by email, text, in clinic, at home with or without your family present, in a facility or any other location—whatever works best for you. The Care Services staff also provides educational programs and in-service presentations to health care agencies serving our Chapter members, such as home care agencies, home and in-patient hospices, and assisted and long-term care facilities. We strive to partner with all of these entities to ensure that individuals with ALS in Wisconsin know that their caregivers truly understand ALS. To schedule an in-service presentation, please contact a member of the Care Services team at 262.784.5257. So often we are asked if there are limits or criteria to accessing the services of the ALS Association Wisconsin Chapter. Many times, it’s assumed that in order to access services you need to be receiving care through the ALS Certified Center at Froedtert or the Milwaukee VA Medical Center. This is not the case. The Chapter is an independent organization that’s here to serve all Wisconsin residents diagnosed with ALS, regardless of where they receive their medical care. We also strive to connect our Chapter members with any and all resources available to them, including community and other non-profit resources whose wonderful programs complement the services our Chapter provides. Our role and mission is to ensure that anyone who comes to us is aware of all the resources available to them. We look to the new year of 2015 with hope, as we continue to work together toward the support of individuals and families living with ALS and the discovery of further understanding, effective treatments and, ultimately, a cure for ALS. Happy New Year!
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Care Services UPDATES
ALS ICE BUCKET TREE JOINS THE “FESTIVAL OF THE TREES” IN GREEN BAY! The National Railroad Museum in Green Bay hosts an annual Festival of the Trees in connection with its very popular “Polar Express” Christmas event. Complete with actors, hot chocolate and a train ride to the “North Pole,” the “Polar Express” runs for several weekends and regularly attracts an estimated 6,000+ people. This year, Carolynne Younk, Care Services Coordinator for Northeast Wisconsin, represented The ALS Association Wisconsin Chapter and decorated a special tree in the spirit of 2014’s phenomenal Ice Bucket Challenge. The tree was adorned with metal buckets that were tipped as if the plastic “ice cubes” and tinsel “water” were being dumped out. What a great way to extend the unprecedented awareness raised by the
What a great way to keep awareness of the ALS Association and its program and services at the forefront for the public!
Ice Bucket Challenge and keep the ALS Association and its programs and services on the public’s radar! The Festival of the Trees ended on January 4, 2015, with record crowds viewing over three dozen trees decorated by area businesses and community agencies. Many thanks to Carolynne and helpers for their awesome creativity and commitment to raising ALS awareness!
FPO
NEED PICTURE FROM WORD DOCUMENT
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Care Services UPDATES SGD CHANGES: What They Mean For People With ALS This past November, the National ALS Public Policy department shared the great news that the Centers for Medicare and Medicaid Services (CMS) has rescinded the “coverage reminder,” which was issued last February and would have prohibited Medicare from covering speech generating devices (SGDs) that included functions such as email and internet access. While this is an important victory, it is only one step forward and we have much more work to do. Therefore, the ALS Association wants to take this opportunity to let you know about the next steps and how you can help. We also want to make sure everyone understands what CMS’ latest action means for people with ALS—and what it does not mean. WHAT IT MEANS: Medicare had planned to prohibit coverage for SGDs that had the capability of performing non-speech functions, including email, texting, internet access and environmental controls. Such devices would not have been covered by Medicare even if a person with ALS paid for those technologies out of pocket and even after they owned the device. This policy no longer will take effect on December 1. Instead, CMS plans to revise its SGD coverage policy, known as a National Coverage Determination (NCD), and has opened a thirty-day comment period ending the first week of December. During this time, the public may submit comments to the agency. CMS will review those comments and has indicated that the agency intends to finalize a revised NCD by the end of July 2015. In the meantime, people with ALS have access to SGDs that have the potential to be “unlocked” to permit access to non-speech technologies. However, this does not mean people have the ability to unlock devices immediately. WHAT IT DOES NOT MEAN: As just mentioned, rescinding the coverage reminder
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does not necessarily mean that people with ALS now can unlock SGDs to permit access to nonspeech functions. That’s because in April 2014, CMS implemented a “capped rental” payment system for SGDs, meaning that people with ALS must rent SGDs for a thirteen-month period before they own the device. During this rental period, it is not yet clear whether Medicare will allow SGDs to be unlocked. The ALS Association has requested clarification from CMS on this issue and has urged CMS to permit devices to be unlocked during the rental period. We will share any response as soon as possible. Rescinding the coverage reminder also does not guarantee that the final NCD that is expected to be issued in July 2015 will ensure access to SGDs and non-speech technologies. We still have more work to do! (See next steps below.) Rescinding the coverage reminder also has no impact on the two other issues that threaten access to SGDs: capped rental and coverage for eye tracking technology. Capped rental: In addition to potentially prohibiting devices from being unlocked during the rental period, capped rental threatens overall access to SGDs. If a person is admitted to a hospital, skilled nursing facility or hospice during the thirteen-month rental period, Medicare no longer will pay the rental fee, forcing a person with ALS either to pay the cost out of pocket or to return the SGD and obtain a new one from the facility to which they have been admitted; however, those facilities do not currently provide SGDs, nor do they have the expertise to deliver a customized SGD. Eye tracking: Over the past year, Medicare has routinely denied coverage for eye tracking, which can make it impossible for some people with ALS to utilize an SGD.
Continued
SGD CHANGES: What They Mean For People With ALS NEXT STEPS: The ALS Association continues to help lead a coalition of organizations working to ensure access to fully functioning SGDs. That coalition includes the American Speech-Language-Hearing Association (ASHA—represents speech-language pathologists), SGD manufacturers and others who worked on SGD coverage policy since before its inception in 2001. Through this partnership, we are presenting a unified front to CMS and are working in a collaborative and strategic way to address each of the three issues impacting access to SGDs. Next steps include: Comments: Working with our coalition partners, the ALS Association is developing recommendations for how CMS should change the NCD to assure patients have immediate access to SGDs and to non-speech functions such as email, the internet, text, telephone and environmental controls. These recommendations will include changes to the NCD that help ensure coverage for eye tracking technology. Your help is needed: As the ALS Association develops recommendation to CMS, we also will send an action alert letting you know how you can help, including sample letters you can send to CMS during the comment period. Please keep an eye out for this alert in the coming weeks. Capped rental: Since CMS’s latest action did not address capped rental, the ALS Association continues to work with CMS, our coalition partners and with Members of Congress to make sure that this new payment system does not in any way restrict access to customizable SGDs or to non-speech technologies. If necessary, the ALS Association is prepared to pursue legislation to compel CMS to fix the problems with capped rental. The Association also is prepared to pursue legislation if the NCD expected in July 2015 does not address the other issues impacting SGDs. While we have made important progress in rescinding the coverage reminder, it is clear that more must be done. Thanks to your efforts, including helping to urge 200 Members of Congress to join our fight, we have made a difference. We are confident that through your continued advocacy, we will succeed and ensure that people with ALS have access to the SGD technologies they need, when they need them. Please keep an eye out for additional information and action alerts about this important issue. To sign up or to become an ALS Association Advocate, visit: http://www.alsa.org/advocacy/get-involved/ THE ALS ASSOCIATION ENDORSES LEGISLATION TO PRESERVE ACCESS TO SPEECH GENERATING DEVICES AND EYE TRACKING TECHNOLOGY. Washington, D.C. (January 29, 2015)—Today, The ALS Association endorsed the Steve Gleason Act, introduced in the Senate by U.S. Senator David Vitter (R-LA) and to be introduced in the House by U.S. Representative Cathy McMorris Rodgers (R-WA), that would help preserve access to speech generating devices (SGDs) and related eye tracking technology. The legislation responds to recent Medicare policy changes that have resulted in denials of coverage for eye tracking and prevented people from accessing SGDs and non-speech communication technology such as email and the internet, which are so critical in the day-to-day lives of people with amyotrophic lateral sclerosis (ALS).
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Care Services UPDATE DR. MELINDA KAVANAUGH PRESENTS STUDY IN BELGIUM In early December, I attended the 25th International ALS/MND Symposium in Brussels, Belgium. The symposium brings together researchers, physicians, and health care professionals from around the world, focusing on improved treatment and care for individuals and families affected by ALS/MND. I was invited to present a poster detailing preliminary results of our study: “Exploration of the Caregiving Experience: Children and Adolescents as Caregivers in the U.S.� Many chapter families have participated in that study. Melinda Kavanaugh, PhD, LCSW
The poster was well received; with many symposium attendees commenting on how little is known about this population, yet how important it is to address their needs and experiences. During the conference, I had the opportunity to network with researchers from various countries, including a group out of the U.K., who are very interested in collaborating with us on the development of programs and services to support children and youth caregivers, across both countries. Overall, attending the symposium was an excellent opportunity to present research, meet other researchers from across the world, and most importantly, bring attention to the lives of children and youth who provide care for a family member affected by ALS/MND.
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Site of International ALS/MND Symposium December 2013
IRB Approval: 14.268 Approval Date: 05/05/2014
Helen Bader School of Social Welfare
ALS FAMILY RESEARCH OPPORTUNITY WHO CAN BE IN THE STUDY? Child or teen age 8 to 19, and lives with a family member with ALS. WHAT IS INVOLVED? A confidential 25 – 45 minute interview with the child/teen about their experiences living with and helping a family member with ALS. WHERE WILL THE INTERVIEW TAKE PLACE? Any place that is most comfortable for the child/teen. WHY IS THIS STUDY BEING DONE? We know little about the experiences of kids and teens that live with a family member who has ALS, including kids and teens who might help take care of that family member. In order to develop services to support kids and their families living with ALS, we need to better understand their experiences and support needs. Your involvement will help to design, and inform programs and services for kids who live with a family member with ALS. Participants will receive a $10.00 gift card as a thank you for taking the time to be part of the study.
TO PARTICIPATE OR RECEIVE MORE INFORMATION CONTACT: Melinda Kavanaugh, PhD, LCSW Assistant Professor Helen Bader School of Social Welfare University of Wisconsin-Milwaukee 608.370.4208 kavanaugh@uwm.edu
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Care Services UPDATE
ALS FAMILY RESEARCH STUDY
CONDUCTED BY DR. MELINDA KAVANAUGH Families represent the majority of caregivers in the US, including those who care for a family member with ALS. While it’s rewarding and fulfilling, it can also be difficult and stressful. Fortunately for adult caregivers, there are many programs and services to support them and provide them with caretaker resources. However, for children in the family, that is not the case. Many kids help care for a family member with ALS but receive little support or even acknowledgment for their help—because there are no programs to support these kids. Whether they care for a family member with ALS, or simply want to talk to someone about what it’s like to have a loved one with ALS, children need to be supported. That’s why we’re launching this study, to gather information about kids who have a family member with ALS, as well as those who help with caregiving. This will help the ALS Association create support programs for these children. The study will be lead by Dr. Melinda Kavanaugh, an assistant professor at UW-Milwaukee in the Helen Bader School f Social Welfare. She has years of experience working with families affected by neurological disorders. If you or a family member is interested in taking part in this study, contact Dr. Kavanaugh at 608.370.4208, or kavanaugh@uwm.edu.
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Support Groups & MEETINGS ALS Caregiver Dinner GROUP MEETING LOCATIONS MILWAUKEE AREA ALS CAREGIVER GROUP LOCATIONS Following are the meeting locations for our ALS Caregiver Dinner Outings. The group meets the fourth Thursday of the month at 7pm. This is a special group for all individuals who currently are or have been in a caregiving role for a loved one, family member or friend with ALS. It is a chance to share with others, give and receive support, and find out good information and tips in a very relaxed environment. Please contact Robin Stanczyk at 262.402.8148 or robin@alsawi.org to RSVP for the dinner outing or for more information. We are looking forward to seeing you! FOX VALLEY AREA CAREGIVER GROUP The newly formed Fox Valley Area Caregiver Group is currently meeting every three months for dinner at an Appleton area restaurant. This is a special opportunity to meet others in the area who are or have been in a caregiving role for a loved one, family member or friend with ALS. This is a time to give and receive support and enjoy some time with others who understand.
Thursday, February 26, 2015 La Fuente 9155 West Bluemound Road, Milwaukee, Wisconsin 414.771.9900 Thursday, March 26, 2015 Saz’s State House Restaurant 5539 West State Street, Milwaukee, Wisconsin 414.453.2410 Thursday, April 23, 2015 Jimmy’s Restaurant / Radisson Milwaukee West 2303 North Mayfair Road, Wauwatosa, Wisconsin 414.257.3400
Wednesday, April 1, 2015 Location and time to be determined
If you would like to be included on the email list for the group or would like more information please contact Diane Fergot at 920.279.4449 or diane@alsawi.org
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Support Groups & MEETINGS *WISCONSIN ALSA CHAPTER SPONSORED Provides support for people with ALS, their families, friends and caregivers. *Milwaukee ALS Support Group Date: Second Saturday of each month Time: 11:00 am to 1:00 pm Place: Froedtert Memorial Hospital Conference Room NT 2209 Address: 9200 West Wisconsin Avenue Milwaukee, Wisconsin Use lot on the right of the main entrance off 92nd street. Handicapped parking lot is located on the South side of the hospital. Contact: Mary DeFrain-Jones at 414.831.3990 or email her at mary@alsawi.org *Milwaukee ALS Caregivers Support Group Date: Fourth Thursday of each month Time: 7:00 pm Place: Locations vary—locations are available on the alsawi.org This group meets monthly at area restaurants for support and to discuss issues related to caring for people with ALS. Contact: Robin Stanczyk at 414.831.3989 or email her at robin@alsawi.org *Fox Valley ALS Support Group Date: Third Tuesday of each month Time: 6:30 pm to 8:00 pm Place: All Saints Lutheran Church Address: 1072 Honey Creek Road Oshkosh, Wisconsin One mile West of Highway 41 Contact: Diane Fergot at 920.279.4449 or email her at diane@alsawi.org
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*Central Wisconsin ALS Support Group Date: Second Monday of each month Time: 6:00 pm to 7:30 pm Place: St. Luke’s Church Address: 2011 10th Street South Wisconsin Rapids, Wisconsin Contact: Deb Roberts at 715.886.5860 or email her at vegtales@wctc.net *La Crosse Area ALS Support Group Date: First Saturday of each month Time: 3:00 pm to 5:00 pm Place: Gundersen Lutheran Hospital Patient Education Room—1st Floor Main Clinic Building Address: 1900 South Avenue La Crosse, Wisconsin Contact: Connie Troyanek at 608.788.0670 or email her at cltroyanek@gmail.com *Northeast Wisconsin ALS Support Group Date: Second Wednesday of each month Time: 6:00 pm to 8:00 pm Place: Options for Independent Living Address: 555 Country Club Road Green Bay, Wisconsin Contact: Carolynne Younk at 920.288.7095 or email her at cyounk@alsawi.org
ADDITIONAL SUPPORT GROUPS AND MEETINGS Northwestern WI (Chippewa Falls) ALS Support Group Date: Second Thursday of each month Time: 1:00 pm to 3:00 pm Place: Chippewa Valley Bible Church Address: 531 E. South Avenue Chippewa Falls, Wisconsin Providing support for people with neurological diseases, families, friends and caregivers. Contact: Julie Chamberlain, LPN, at 715.271.7257 or email her at alsnwwi@gmail.com Rockford Area ALS Support Group Date: Fourth Saturday of each month Time: 12:00 pm to 2:30 pm Place: OSF St. Anthony Medical Center Address: 5666 E. State Street Rockford, Illinois Contact: Tony Cook at 312.257.5434 Milwaukee Ventilator Users Support Group Date: First Tuesday of each month Time: 6:30 pm to 8:00 pm Place: St. Mary Hill Hospital, Long Term Respiratory Unit Address: 2323 North Lake Drive Milwaukee, Wisconsin Provides support for people on ventilators, their families, friends and caregivers in the Milwaukee area. Contact: 414.352.2185 or 414.963.9686
Milwaukee MDA Support Group Date: Third Monday of each month Time: 7:00 pm to 9:00 pm Place: Froedtert Memorial Hospital Conference Rooms A and B Address: 9200 West Wisconsin Avenue Milwaukee, Wisconsin Provides support for people with neurological diseases, their families, friends and caregivers in Southeastern Wisconsin. Contact: 414.453.7600 Madison MDA/ALS Support Group Date: Second Tuesday of each month Time: 12:30 pm to 2:00 pm Place: Dean Clinic Address: 700 S. Park Street Madison, Wisconsin Group meets in Deli Room 1, next to Fit N Fresh, on the Lower Level Contact: Mary at 608.222.3269 Duluth-Superior Area ALS Support Group Date: Fourth Tuesday of each month Time: 1:00 pm to 2:30 pm Place: First Street Clinic (Aurora Room) Address: 420 East First Street Duluth, Minnesota Third floor parking ramp on First Street, West side of building; Skyway to building on second level. This group breaks into two groups (PALS and families/ friends/caregivers) on a quarterly basis or as requested. Refreshments are served. Contact: For questions or to RSVP call 218.786.5399
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The
Teacher
J
By: Natalie Jansky
Juanita Richter’s Story
Photos by Lucian McAfee | lucianmcafee.com
uanita Richter could brighten up the darkest room. She’d fill it with laughter by telling jokes made only at her own expense. Her positive energy would take over the room, creating smiles on the faces of those around her. And with each story she’d tell, she’d inspire them to do better, and be better. That’s the type of person she is. She’s a mother, grandmother, sister, aunt, friend, counselor, problem solver, spiritual observer and teacher. And less than two years ago, she became an ALS patient. But unlike those descriptors that preceded her diagnosis, she doesn’t let ALS define who she is. “Living with ALS is an experience, it is not who I am,” said Juanita. “It allows me to continue to grow spiritually and mentally. Every day is a new challenge and a new opportunity to learn, to grow, and to challenge my own mental capacity.”
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“Living with ALS is an experience, it is not who I am...”
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Those new challenges began back in 2011, when Juanita’s right hand started to weaken. She thought it was rheumatoid arthritis, a disease her dad suffered from, but doctors ruled it out. After more hospital visits and tests, she was told her condition was “indefinable.” It wasn’t until October of 2013 when that changed.
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“After being told I had ALS, I thought, ‘Okay, I need to go figure out what that is,’” she said. “And I realized it’s a terrible way to die.” But she also saw it as an incredible opportunity to learn, which is one thing she’s always loved to do.
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For instance, she went back to school at 57 years old to chase her dream of becoming an acupuncturist. She said the three-year-program was one of the toughest things she had ever done, especially while simultaneously working a full-time job. But she did it, and graduated on the very day she turned 60 years old. Neither her family members nor friends were surprised by her successful endeavor. She was just practicing what she had always preached. “She taught her loved ones to go after what they want, and to not be afraid of trying something new and interesting,” said her daughter-in-law of 20 years, Gina.
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“She was always self-sufficient, strong, independent and thought outside of the box,” said her son, Kevin. “She made things happen.” Juanita’s other son, Eric, said much of the same. “She moves to her own beat regardless of what other people think,” he said. “She does things her own way and still does even after her diagnosis.” Juanita practiced acupuncture for seven years before ALS forced her retirement. While it wasn’t easy for her to give up so much of what she enjoyed— like long nature walks with her grandson every Sunday, capturing her surroundings through her camera lens and sitting at her computer every morning to write — she made the best of it. “I create solutions to my own problems and I readjust,” she said. And she’s found plenty of things to keep her busy despite the physical limitations she faces everyday. “I refuse to give into them.”
“She was always self-sufficient, strong, independent
and thought outside of the box,” said her son, Kevin. “She made things happen.”
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“LOVE IS MY GUIDE, I find joy in seeing the affect of love on others.”
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“Love is my guide,” she said. And she’s made it a part of her everyday life to spread it. “I find joy in seeing the affect of love on others.” Since moving into Parkview Gardens Assisted Living Apartments last spring, she has befriended tenants and staff members who were quickly enamored by her optimism and sense of humor. “Juanita is greatly respected by those around her and has a reputation amongst the other residents as ‘the teacher,’” said Erin Boutan, Executive Director of Parkview Gardens. “She successfully leads formal discussion groups with other residents about life’s transitions, and relieving the fears and anxieties that surround the journey to the end of life. Almost as importantly, her willingness to engage in conversations and answer questions about her diagnosis and care with a mix of humility and humor have been invaluable to our staff members as we share in her journey and learn how it unfolds.”
Her advice to other ALS patients is “just do it, there is no problem the human mind cannot solve.”
“ALS patients have a lot more power than they think,” Juanita said. “We have the opportunity to teach people. To inspire.” The thing about Juanita is that she’s been doing both her entire life.
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CARE SERVICES HOLIDAY PARTY Our holiday parties are wonderful traditions that bring families affected by ALS together to celebrate and kick off a new year. We never cease to be inspired by the dedication, strength and courage of these families.
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In Our COMMUNITY
MONET TO GOGH ART PARTY Thanks to the Monet to Gogh team for donating proceeds from one of their paint parties back to our Chapter. The ALS crew had a blast.
THANK YOU
CVS
Check Presentation CVS helped raise money and ALS awareness by putting donation boxes in a number of stores. We’re truly grateful for their support and partnership.
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“ICING ALS” Symposium
Jim Eutizzi and Trickett Wendler inspired a room full of researchers at the Medical College of Wisconsin’s “Icing ALS” Symposium. Thanks for continuing to spread ALS awareness by sharing your stories.
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DESPITE ALL THAT ALS DESTROYS,
Trickett Wendler and Beth Popa Castelvetere
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SOMETIMES IT CREATES SOMETHING BEAUTIFUL. Out of a devastating disease comes an unbreakable bond: Milwaukee ALS patient Trickett Wendler shares her Facebook exchanges with a fellow ALS patient and mother from Ohio —Beth Popa Castelvetere. As these posts demonstrate, until there’s a cure for ALS, there’s at least a silver lining.
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THE CHAPTER WINS TWO AWARDS —PLUS CASH—FOR ITS CREATIVITY. The ALS Association Wisconsin Chapter won not one, but two awards from the Milwaukee Journal Sentinel’s annual Partners For Humanity program. The program offers free placement of pro bono ads created by the Wisconsin region’s top creative talents—in both print and online media. It also features a creative competition, with the top three winners in both the newspaper and social media categories earning cash donations from the Journal Sentinel. The “Hostage” ad shown here took 3rd Place in the Newspaper category, and, more importantly, 1st Place in the Social Media category—scoring the most public votes on the Journal Sentinel’s Facebook page. The wins earned the Chapter a $1,000 donation, and if you’re one of the many who voted for us, we thank you! We also thank Traction Factory, who continues to help us take ALS awareness to a new level. As these wins indicate, our messages are definitely making an impact.
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By RoxAnne Fox
January, 2015
Bob is My Hero Robert Bonine was diagnosed with ALS on March 15, 2013. He was 56 years old and at least 8 years away from retirement. My name is RoxAnne Fox and I am Bob’s significant other, partner, and friend. Bob is my best friend and love of my life. We have been together since 2003, and I’ve written this article to honor Bob and to share our ALS journey, as everyone’s experience is different. I’m a member of the La Crosse Wisconsin ALS Support group and have learned from others who have been living with or caring for someone with this disease that it’s important to talk about and share experiences with others who can relate to our journey. While Bob was officially diagnosed in March of 2013, I believe he was having signs and symptoms much earlier. And so, this is Bob’s story... As we drove across the country to Santa Fe, New Mexico for a greatly anticipated vacation in 2009, I noticed that Bob seemed to be panting—taking short, shallow breaths—especially after short trips from the car to the motel or restaurant. When I asked him why he was so out of breath, Bob could not answer. He wondered aloud if altitude was affecting him for some reason, or perhaps the heat? It was July, after all. We were in the desert and it was hot.
As the week wore on, however, it seemed to become increasingly more challenging for Bob to walk very far without wanting to sit and rest and catch his breath. In the fall of 2009, Bob called out to me one morning as he was getting up and said he wasn’t able to catch his breath. We went to the ER, where Bob was evaluated and told that his oxygen level was at about 70%. He was blue around the lips. A pulmonary specialist spent a lot of time with Bob that day and asked many questions. Bob was admitted to ICU overnight and spent a couple of days as an inpatient. He was not allowed to leave the hospital until a new kind of sleep apnea machine arrived and came home with us. This was an AVAPS (average volume assured pressure support) BiPap machine. It’s a noninvasive machine that automatically adapts to disease progression and changing patient needs. It worked wonders! Bob felt great. He continued to feel much better and seemed to be back to his old self again for a couple of years. The only odd thing was that Bob was no longer able to lie down without his AVAPS BiPap—he wasn’t able to take any breaths while lying in a prone position. I firmly believe that this noninvasive machine
Bob & Roxanne in Duluth, Minnesota.
has kept Bob stable and slowed the progression of ALS. We learned that not everyone experiences ALS in the same way, so our path may have been very different. For 21 years, Bob was a Chemistry and Physics teacher at De Soto High School, south of La Crosse, Wisconsin. Bob loved his job and was good at it. Students often praised “Mr. B09,” as they lovingly called him, as a really good teacher. So when he started losing weight, I wasn’t the only one who noticed. Bob had given up drinking soda and had dropped a few pounds, but I became quite concerned when he kept losing weight despite no change in his diet or calorie intake. I kept asking why he thought he was losing weight so quickly? He wasn’t sure and we didn’t speak the words... but a return of cancer was in our minds. Bob had been diagnosed with Stage 3C Colon Cancer in 2007. It was a routine colonoscopy and he was sent home feeling assured that the polyps they had found would turn out to be normal. Unfortunately, a phone call a few days later revealed that cancer had been discovered in the polyps and it was recommended that Bob have surgery to remove part of his colon.
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Between August 2007 to February 2008, Bob received aggressive chemo and radiation treatment. Despite the ordeal, he rarely missed work throughout his cancer treatment and was pleased to receive his Robert Bonine “diploma” for completing the chemotherapy. During his annual checkups from 2008 to present, Bob has remained cancer free. However, he continued to lose weight, and by January 2013 his chart indicated he had lost 65 pounds in just over a year. Even though I nagged him to see his doctor, he didn’t make an appointment. But he ended up in the emergency room in December 2012. Instead of traveling to his home state of Michigan for the holidays on December 23, 2012, Bob asked me to take him to the hospital. He thought he was fighting some kind of cold—or possibly pneumonia. As we sat in the Emergency Room for a better part of that day, Bob was given several exams and received oxygen to help him catch his breath. X-rays were taken and it was suggested he visit his regular physician. But two days later, on Christmas Day, we were back in the ER. Once again we spent the day seeing a host of doctors and technicians. EEGs were ordered. More X-rays were taken. We were sent home with some antibiotics, an inhaler and an appointment to visit his regular doctor later that week. Both of us were thinking “they’re looking for cancer”, but we didn’t speak it aloud. I think both of us knew at that time that something was very wrong. On December 28, 2012, Bob visited his physician’s office. When the Physician’s Assistant took Bob’s weight and blood pressure, the long day ahead of us began. He had lost another 10 lbs. since he’d been seen on the 25th in ER—2 days ago! More
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chest X-rays were taken. A CAT Scan was ordered as well as lots of blood work. At the end of the day, we still had no definitive answer, but the Physician’s Assistant was extremely concerned and asked Bob to return 2 days later so she could consult with him and his regular doctor. As we left the clinic that day, both Bob and I feared a diagnosis of lung cancer. But... instead we learned that all scans, X-rays, and blood work continued to reveal that there was no cancer in his body. His lungs were clear. The next step was an evaluation by a neurologist, which led us to begin researching neurological disorders and diseases. (Even though the medical community advises against researching on one’s own, I think we’re all guilty of looking.) In January 2013, Bob saw Dr. Michael Leone, a neurologist at Gundersen Health Systems. Dr. Leone spent time with us and
“ Bob lived his life the best way—HIS WAY.” evaluated Bob’s walk, stance, muscular movements, extremities, and so on. We were then sent to a clinic in St. Paul, MN for an MRI, to check for possible arthritis. On our next visit to Dr. Leone in February 2013, we were told that Bob’s arthritis and stiffness in his neck were not of any great concern. So Dr. Leone administered a test for muscle involvement called the Electromyography (EMG), which measures the electrical activity produced by skeletal muscles. We later found out this was the test that finalized the diagnosis. On March 15, 2013, at Bob’s appointment with Dr. Leone, we learned that having ruled out everything else, the diagnosis appeared to be ALS. Bob was shocked. Having thoroughly researched all motor neuron diseases, I was especially sad to learn it was this one—ALS. And, while ALS affects every patient differently, Bob’s ALS had settled in his diaphragm—the nerves and muscles were dying. So Bob’s ALS started out as respiratory. His extremities were not affected and he had no problems swallowing or talking, except that he “ran out of air.” After meeting with a social worker, we left the clinic that day with a binder of information to read, as well as paperwork to file for disability. Bob had a lot of decisions to make, and the first major one concerned his career. He was no longer able to project his voice— which caused him great angst for lecturing and teaching his classes. He cared about his students and knew that if he wasn’t able to teach them, it was unlikely they could grasp the material on their own. However, at 56 years old, Bob was forced into retirement by ALS. His last day at work, April 17, 2013, was a sad day—for him, for me, and especially for his students.
This was just the latest in a lifetime of struggles for Bob. When he was 13, he was diagnosed with Rheumatoid Arthritis. He lived most of his life with joint pain. In 2004, he slipped on his patio and broke his femur. After surgery and during his recovery, he was diagnosed with TYPE II Diabetes and Sleep Apnea. Bob was also told that he did not have Rheumatoid Arthritis but Osteoarthritis instead. In 2006, he had surgery on his ankle for Squamous Cell Carcinoma. In 2007, he received the Stage 3 Colon Cancer diagnosis described earlier. Yet with all the adversity Bob has faced throughout his life, he’s never complained. And when he learned of his ALS diagnosis, his strength did not waiver. Bob’s motto “It is what it is” has provided strength for me as well. We cannot fight this disease with anything other than our passion and will. Bob tells me he has had a good life, and even though he would like to spend more time here with his friends and family, he faces his death with no fear. Together, we’ve met with funeral directors, social workers, palliative care doctors, financial advisors and attorneys. Bob is also helping me write his obituary, which will express his humor and wit. Everything is “in order,”so to speak. We’ve addressed all the mundane details we must face at the end of our lives—finances, property ownership, wills, etc. Those discussions are done. Now we live. Once he retired, we began traveling, and visited family and friends in Michigan, Illinois and Wisconsin. He wanted to spend quality time with quality people. Bob is also content to be at home enjoying his favorite foods and watching the Packers, the Detroit Tigers and the Badgers. Bob’s longtime friends and fellow teachers often stop by to watch a football game or movie with him. Every once in awhile “the boys,” as Bob calls them, gather in our home for a game of poker. They have some beers, a few laughs, and lose pennies gambling the night away.
What Would Bonnie Do?
Live, Laugh and Waft.
Bob & Jasmine at her graduation.
One of Bob’s students went above and beyond when she designed a bracelet to sell, honoring Bob and his fight with ALS. One side of the bracelet has “W.W.Bo-9.D.”—which stands for “What Would Bonine Do?” The other side uses element abbreviations from the Periodic Table to convey advice the popular chemistry teacher often shared: “Li-V, La-F, WAFT”, which stands for “Live, Laugh and Waft” (do not take a deep breath of a chemical, but instead waft your hand gently over the opening of the chemical bottle). The student, Jasmine, encompassed Bob perfectly by incorporating his humor and wit as a teacher into the message on the bracelets. Bob is my hero. He faces adversity—whatever it is—with grace and courage. He knows he cannot change anything that has happened, so he chooses to live each day with dignity and a calm attitude. He refuses to be pampered or attended to for things he can still do himself. And even though mobility is becoming more difficult, due to increasing time he needs to spend on the BiPap machine, there’s never a pity party at our house. Bob would rather laugh each day than shed any tears. He looks at life and what it has given him as a glass that’s half full—not half empty. I believe his positive attitude is what keeps him stable and as healthy as he is at this stage of his disease. And I believe it will sustain him throughout the challenging days ahead. Bottom line, Bob wants to live with ALS his way. And I want to be able to say, “Bob lived his life the best way—his way.”
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DAN’S RETIREMENT PARTY Dan Guendtert has been one of the most dedicated volunteers to ever work at our Chapter and is extremely well-respected throughout the ALS community. He’s well known for his work ethic, positive attitude, teamwork mentality and leadership. Dan has played an important role in the rapid success and growth of our events, and his dedication has directly impacted ALS patients and their families. He embodies the spirit of greatness and we thank him for his inspiring dedication. Happy UPS retirement, Dan.
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Contributions & MEMORIALS
THANK YOU FOR A WONDERFUL DILEMMA. The good news: the outpouring of donations generated by the Ice Bucket Challenge pushed our total 2014 contributions beyond our wildest expectations. The bad news: there were so many contributors, we can’t possibly fit everyone’s name in this HopeLine issue. But please know we’re grateful for each and every one of you who donated—through the Ice Bucket Challenge, our Walk to Defeat ALS events, or other means. Divided between the Wisconsin Chapter’s Care Services and ALS research, every dollar makes a difference to Wisconsin residents and their families living with ALS. And, through the wonders of the digital age, we ARE able to fit the names of all the Aug. 1, 2014 – Dec. 31, 2014 contributors on our website. You can check out the complete list at alsawi.org. Here’s to a similar dilemma in 2015!
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In MEMORIAMS
Honoring the lives and legacies of those who’ve made an indelible impact on the ones they’ve left behind.
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Wendell Adams
‘ ‘ Marjorie Barrette ‘ Romel Cooney ‘ Kenneth Dailey ‘ Sue Demers ‘ Robert Gray ‘ Kenneth Head ‘ Gerald Herman ‘ Kristine Holton ‘ Judy Johanning ‘ Karen Kish ‘ Richard Klabechek ‘ Kenneth Kozak ‘ Elaine Krackow ‘ Barbara Krizizke ‘ Margaret Martin ‘ Fred Matthes ‘ Richard McDermott ‘ Oliver Bade
Anne Ney
‘ ‘ Ken Ochalla ‘ Anna Opperman ‘ James Paape ‘ Larry Reeve ‘ Tom Seversin ‘ Steven Sieghold ‘ Robert Slak, Sr ‘ Harry Slawter ‘ Dian Sorenson ‘ John Spaulding ‘ Kenneth Traeder ‘ Nancy Trepanier ‘ Doug Turley ‘ Linda Wilson ‘ Melinda Wolter ‘ Johnnie Young ‘ Louise Nunnery
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NON-PROFIT ORG U. S. POSTAGE
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