HopeLine Magazine - Winter 2014

2014 A SEASON OF HOPE W INTER

Issue 4

INSIDE:

Barbara Newhouse Visit 25 / MKE Walk/Run to Defeat ALS 28 / Packers Family Night 44 / UPS Check Presentation 47

The NFL Brotherhood GREEN BAY PACKER MORGAN BURNETT TAKES ON ALS PA GE 38

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 IT’S TOO OUTDATED.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

Barbara Newhouse Visit PAGE

25

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

08

Support Groups & Meetings

19

Care Services Update

22

Cover Story

38

In Our Community

48

Contributions & Memorials

64

In Memoriams

66

MKE Walk/Run to Defeat ALS PAGE

28 WHERE TO FIND US: alsawi.org Facebook.com/ALSAWisconsin Twitter.com/ALSAWisconsin YouTube.com/User/ALSAWisconsin

Packers Family Night PAGE

44

HopeLine is published quarterly by The ALS Association Inc. Wisconsin Chapter 3333 N Mayfair Road, Suite 213 Wauwatosa, WI 53222

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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 Scott Bucher Colleen Dougherty Curt Downes Mary Druml Shannon Egan Jim Eutizzi Dave Hanneken Brad Hicks Candace Lesak Joe Lewis Meg McKenzie Alison Murphy Dan O’Donnell Jim Palmer Signe Redner Tim & Trickett Wendler

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Executive Director:

Melanie Roach-Bekos

D

ear Friends, Unless you spent the summer in a remote cave, you know the Ice Bucket Challenge not only became the social media phenomenon of the season, but the new benchmark for how peer-to-peer fundraising can create massive impact. The Ice Bucket Challenge had organic roots. And while it didn’t start with former Boston College baseball player Pete Frates, he deserves credit for making it about ALS.

We all saw countless videos of family, friends and PALS who stepped up to take the challenge. We watched together in amazement as everyone from Aaron Rodgers and Oprah to George W. Bush and Bill Gates got soaked in the name of ALS. It has been the perfect blending of a fun activity, a compelling cause, accessibility and social networking.

In other words, it’s something simple that people wanted to do to help others. If you were challenged, I hope you chose to accept.

Whether you got drenched, made a donation, or both, your participation has made a major difference in the fight against ALS. For that, I thank you.

I also find it imperative to let you know that none of the money raised by the Ice Bucket Challenge in Wisconsin will be used for the Chapter’s operational or administrative expenses. Half of the funds have been allotted to ALS research, while the other 50% will stay in Wisconsin to assist local ALS patients and their families through the Trinastic Grant Program, Equipment Loan Program and the ALS Certified Clinic at Froedtert Hospital. More information about these programs can be found on our website at alsawi.org.

As you may know, ALS research has long been severely limited by funding shortages, which is why there are still no effective treatments and no cure. But thankfully, the Ice Bucket Challenge will change this landscape. Scientific efforts that were never imaginable are now possible. Making the most of each dollar means developing milestones for every funded project, and then communicating the results. We’ll do everything we can to keep you informed on the progress that’s made. Please stick with us, because long after the ice has melted, we’ll still be working to find a cure.

In other news, we made Lambeau Field our home for the Green Bay Packers Family Night on August 2nd. I’d like to thank the Packers, and especially Coach Darren Perry and Morgan Burnett, for their help in making this partnership a reality. It was a wonderful event.

I also wish to extend a big thank you to the sponsors, attendees and volunteers who supported the Platteville, Appleton and Milwaukee Walks to Defeat ALS — and especially the Chairpersons of these events: Jessie Mullen, Marie Kratochvill, Tanya Clayton, Jodi Pluemer, Mariah Droessler and Angela Newman (Platteville Walk); the Weber, Driessen and Esqueda families (Appleton Walk); and Chris Stich, (Milwaukee Walk/Run), who led us on the 2nd Annual Run in Milwaukee.

All proceeds of the Wisconsin Walk/Runs stay in Wisconsin and support Care Services, the ALS Clinics at Froedtert and the VA Hospitals, our equipment loan program, the Brian Trinastic Grant program and costs related to public awareness, communications, operations and advocacy efforts. As important as the funds the events raise is the sense of community they create for ALS patients and their loved ones.

Obviously, there’s been a lot to talk about since the last issue of HopeLine. I’ll wrap it up by mentioning the 2015 Evening of Hope, which is currently in the planning stage. If you need yet another reason to attend this March 7th gala, just remember that all funds raised at this event are dedicated for research.

As we prepare to celebrate the holidays and enter a New Year, I wish you and yours continued blessings and ever-present hope.

I’m truly optimistic that the Ice Bucket Challenge and our ongoing efforts will bring us closer to achieving our goal of ending ALS. Peace,

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Upcoming EVENTS 2014-2015 ALSA-WI EVENTS

2014-2015 COMMUNITY EVENTS

Care Services Holiday Party December 6, 2014 Sheraton Milwaukee Brookfield Hotel Janet Gauger: janet@alsawi.org / 262.784.5257

Banding Together // March 7, 2015, Eclipse Center Terry Russell: terry.russell@cciwi.com / 608.207.0136

Evening of Hope March 7, 2015 Hyatt Regency Milwaukee Natalie Jansky: natalie@alsawi.org / 414.831.3993 / beatals.org

Rockin’ For A Cure // April 25, 2015 , Sheraton Madison Hotel Mike Anello: manello@mcw.edu / (414) 955-2802

ALS Care & Research Symposium May 2, 2015 Sheraton Milwaukee Brookfield Hotel Janet Gauger: janet@alsawi.org / 262.784.5257

ALS Poker Run // August 15, 2015, Straight 8 Bar Sandy Osterloh: sandyosterloh@yahoo.com

Chasin’ A Cure Tailgate July 17, 2015, Miller Park Natalie Jansky: natalie@alsawi.org / 414.831.3993

Ice Cream Ride for ALS // August 23, 2015, Burlington Deb Heinzelmann: debheinzel3@gmail.com / 262.210.2568

Toast to Hope // April 18, 2015, Hal’s Harley Davidson Carrie Schmidt: carrie.schmidt@halshd.com / 262.814.8684

Koebel Open // May 30, 2015, Meadowbrook Country Club Rachel Torgerson: rachelt00@yahoo.com / 414.688.5338

WAC Chips In // August 21, 2015, Ironwood Golf Course Randy Foss: rfoss@thewac.com / 414.427.6500

Team Bernette Manitowoc Walk // August 29, 2015, Manitowoc tinakocourek@gmail.com / 920.242.7298 American Legion Community Days // Date TBD, ALS Walk, Onalaska onalaska@gmail.com / 608.783.3300 Vintage Baseball Game // Date TBD Kay Van Sluytman: kay.vansluytman@thrivent.com / 920.684.3225 A Touch of Glass Dinner and Concert // Date TBD Kay Van Sluytman: kay.vansluytman@thrivent.com / 920.684.3225

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Research UPDATES The ALS Association Announces Initial Commitment of $21.7 Million from Ice Bucket Challenge Donations to Expedite Search for Treatments and a Cure for ALS

Additional $12.5 Million in Matching Gifts Bring Total Commitment to $34.2 million WASHINGTON, Oct. 2, 2014 /PRNewswireUSNewswire/ — After the generous outpouring of support from people all around the globe due to this summer’s Ice Bucket Challenge, the Board of Trustees of The ALS Association has approved an initial expenditure of $21.7 million in funding to support six programs and initiatives to expedite the search for treatments and a cure for amyotrophic lateral sclerosis (ALS). Additionally, $12.5 million in matching donations bring the total commitment to $34.2 million.

Four of these projects involve global research cooperative alliances that would not have moved forward without this significant funding from The Association, made possible through the generosity of donors worldwide, along with matching gifts.

“We recognize the sense of urgency felt by people living with the disease and their families and I want to assure everyone that our number one commitment is to making decisions that get treatments to patients in the fastest way possible,” said Barbara Newhouse, President and CEO of The ALS Association. “Our roadmap to treatments involves collaboration with other ALS organizations and with industry, university investigators, government agencies, pharmaceutical and biotech companies and other nonprofit organizations committed to the fight against ALS.” During a 30-day period this summer, The ALS Association received more than $100 million in donations. Over the last few weeks, The Association has actively convened key stakeholder groups, including a panel of advisors made up of people living with ALS, to provide input into a comprehensive plan that The Association will release in early November after approval from the Board of Trustees.

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The bulk of The ALS Association’s initial $21.7 million commitment—$18.5 million—will advance four new cooperative alliances for the next one to three years involving research that has been identified as critical to finding new treatments for ALS: ALS Accelerated Therapeutics (ALS ACT), The New York Genome Center, the Neuro Collaborative, and Project MinE. These projects would not have been possible without Ice Bucket Challenge donations.

There will be synergies between these four initiatives that will increase the quantity, and most importantly, the value of data openly available to the ALS research community worldwide. The ALS Association will play a pivotal role in coordinating these efforts.

Under the leadership of The ALS Association’s Chief Scientist, Lucie Bruijn, Ph.D., M.B.A., The Association has been involved in the planning of each of these new collaborations, and, in each case, has sought the advice and evaluation of leading researchers to assess scientific merit, to gather additional ideas for each project, and to ensure the maximum relevance to future therapies.

ALS Accelerated Therapeutics (ALS ACT) ALS ACT is a novel academic-industry partnership to accelerate treatments for people living with ALS, which is able to proceed with a $10 million commitment from The ALS Association and matching gift of $10 million from The ALS Finding a Cure Foundation.

The combined contributions from The ALS Association and The ALS Finding a Cure Foundation will significantly expedite therapy development. The ALS Finding a Cure Foundation is led by Peter N. Foss, Lee Rizzuto and Denis Rizzuto. The foundation was created in April of 2014 and is a tribute to Denis’ wife, Christie Rizzuto, who was diagnosed with ALS five years ago at age 41.

Continued

The ALS Association Announces Initial Commitment of $21.7 Million from Ice Bucket Challenge Donations to Expedite Search for Treatments and a Cure for ALS ALS ACT will enact a multi-pronged approach to expediting clinical trials in ALS. Efforts will include (1) developing neuroimaging tools as potential biomarkers for ALS progression, a key unmet need in trials; (2) development of therapeutic approaches to decrease production of misfolded proteins within motor neurons and reverse neuroinflammation, two major contributors to the disease process; (3) a challenge grant program to overcome key roadblocks in the search for therapies; (4) support for phase IIA pilot clinical trials using biomarkers.

Merit Cudkowicz, Co-Chair of the Northeast ALS Consortium (NEALS) and Chief of Neurology and the ALS Program at Massachusetts General Hospital (MGH), notes that these efforts will accelerate diagnosis, speed development of new treatments for people with ALS, and remove road blocks to finding a cure for ALS. In addition, ALS ACT will strengthen ongoing collaborative efforts in support of clinical trials, including NeuroBANK, a central repository for clinical research data in ALS, and the NEALS (Northeast ALS Consortium) Biorepository. Initially established through the Translational Research Advancing Therapies for ALS (TREAT ALS™) NEALS Clinical Trials Network, NeuroBANK will host, curate, and disseminate proteomic, genomic and clinical data.

Investigators: Merit Cudkowicz, M.D., MSc, Massachusetts General Hospital; Robert J. Brown, Jr. M.D., D. Phil., University of Massachusetts; Stanley H. Appel, M.D., Houston Methodist Hospital System; and Clive Svendsen, Ph.D., Cedars-Sinai; Nadeem Ishaque, Ph.D., and Tom Gentile Senior Vice President General Electric.

New York Genome Center (NYGC) The ALS Association and its Greater New York Chapter will match a $2.5 million gift from The Tow Foundation in support of a new project at the NYGC, which will bring together for the first time a world-class scientific team to further understand the genetic basis of ALS. Recent discoveries have indicated that genes may contribute to a much larger percentage of ALS cases than previously thought. Finding these genes and understanding how they work will allow development of new therapeutic approaches. Under the leadership of Drs. Robert Darnell and Hemali Phatnani together with their advisors, including Tom Maniatis and Marc Tessier-Lavigne, the NYGC will spearhead a cooperative and multidisciplinary effort to provide open-source “big data” to benefit the entire ALS research community.

Investigators: Robert B. Darnell, M.D., Ph.D.; Hemali Phatnani, Ph.D.; Tom Maniatis, Ph.D.; Marc Tessier-Lavigne, Ph.D.; Merit Cudkowicz, M.D., MSc; Robert J. Brown, Jr. M.D., D.Phil.; Virginia Lee, Ph.D.; John Q. Trojanowski, M.D., Ph.D., Alex Sherman; James Berry, MD; Neil Shneider, M.D., Ph.D.; David Goldstein, Ph.D.; and Tom Jessell, Ph.D. Neuro Collaborative The Neuro Collaborative will combine the efforts of three world renowned California labs focused on ALS: Cedars-Sinai in Los Angeles, the University of California San Diego and the Gladstone Institutes, an affiliate of the University of California San Francisco, to develop and expedite therapeutic approaches for ALS. The collaborative, which now has funding to proceed with $5 million in Ice Bucket Challenge funding from The ALS Association, will focus on the following: (1) development of antisense therapy for the C9orf72 gene, the most common genetic cause of ALS, in partnership with Biogen-Idec and ISIS Pharmaceuticals; (2) gene therapy to down regulate SOD1, the second-most common ALS gene; (3) establishment of a Stem Cell and Motor Neuron Core Facility to create clinical-grade induced pluripotent stem (iPS) cell lines, which will be openly shared with the ALS research community. IPS cells have emerged as a key research tool and potential source of therapeutic cells in ALS.

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Continued

The ALS Association Announces Initial Commitment of $21.7 Million from Ice Bucket Challenge Donations to Expedite Search for Treatments and a Cure for ALS » 4) Using a novel screening tool, identify new targets for drug development and in partnership with the industry these leads will be developed further with the potential of new treatment options in the clinic. The Golden West Chapter of The ALS Association has played a key role in the planning and development of this project.

Investigators: Don Cleveland, Ph.D. UCSD; Steven Finkbeiner, M.D., Ph.D., Gladstone Institute, UCSF, Clive Svendsen, Ph.D., Cedars-Sinai Medical Center; and collaborators, Martin Marsala, M.D., UCSD; and Brian Kaspar, Ph.D., Children’s Hospital and Ohio State University.

Project MinE is a global collaboration with the goal to sequence the genomes of at least 15,000 people with ALS in an effort to discover new genes that affect ALS, either increasing the risk for the disease or protecting against it. The ALS Association’s funding commitment of $1 million will enable Project MinE to expand to the United States.

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It has become clear that risk for ALS is likely influenced by variants in multiple genes, each of which is relatively rare.

The development of advanced sequencing technologies has dramatically reduced the cost of screening large numbers of individuals for these rare variants. Discovering these variants, and understanding how they contribute to disease, or protect against it, is likely to lead to novel approaches to ALS therapies.

U.S. Investigators: John Landers, Ph.D. University of Massachusetts, Worcester; Jonathan Glass, M.D., Emory University.

International partners include the Netherlands, United Kingdom, Ireland, Spain, Portugal and Belgium.

In addition to the abovementioned collaborative alliances to drive forward ALS research, The ALS Association’s Board of Trustees also approved two other projects to expedite the search for treatments and a cure for the disease through care services and public policy efforts.

Grants to Certified Treatment Centers of Excellence The ALS Association and its network of chapters currently partner with 43 ALS Association Certified Treatment Centers of Excellence across the United States. Multiple studies have shown the value to a patient of attending a multidisciplinary clinic, including longer survival, increased quality of life, and improved access to potential therapies. One of the requirements in achieving certification through The ALS Association is for the institution to be actively involved in ALS-related research and to provide information to people living with the disease on research outside of their institution. Participation in clinical trials is imperative to the research process to find treatments for the disease. The Ice Bucket Challenge donations have enabled The Association to increase its annual grants to the centers from the presently budgeted $12,500 to $25,000 per center, which was the funding level pre-2008, for the next three years.

Regulatory Guidance to Expedite Drug Development Organizations involved in two other neurological diseases (Alzheimer’s and Duchenne Muscular Dystrophy) have seen great benefits in working to develop guidance for companies to help them navigate the regulatory pathway for approval of effective therapies.

The enactment of the patient-focused drug development elements of the Food and Drug Administration Safety and Innovation Act (FDASIA) presents a unique opportunity for The ALS Association to help expedite drug development by developing similar guidance for ALS. No such guidance exists today for ALS, which creates uncertainty and risk for what is already a difficult and costly process. By developing this guidance, The ALS Association will be able to build on and strengthen its engagement with the FDA, industry and people with ALS about drug development as a regulatory process, which will reduce obstacles that can slow and limit innovation and access to effective treatments.

About The ALS Association The ALS Association is the only national non-profit organization fighting ALS on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure. For more information about The ALS Association, visit our website at www.alsa.org.

SOURCE: The ALS Association http://www.prnewswire.com/news-releases/the-als-association-announces-initial-commitment-of-217-million-fromice-bucket-challenge-donations-to-expedite-search-for-treatments-and-a-cure-for-als-277888461.html

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Research UPDATES Updated: April 1, 2014

Medicare Coverage for Speech Generating Devices On April 1, the Centers for Medicare and Medicaid Services (CMS) changed the manner in which it pays for speech generating devices (SGDs). Under the change, called “capped rental,” PALS who need SGDs and are covered by Medicare will be required to rent them over a 13-month period, after which time they will own the device. Under the previous policy, people with ALS had the option to purchase SGDs upfront, which is how the vast majority of Medicare-covered PALS obtained SGDs. The payment system change does not apply to anyone on Medicare who currently owns an SGD. Capped rental also does not affect which devices Medicare will cover, or the evaluation and documentation required to support Medicare coverage.

While this switch may seem to be a minor change in policy, it may have significant impacts on patients.

Those impacts include: Access: If people have an extended hospital stay or are in hospice or a nursing facility while they’re in the 13-month rental period, Medicare will not cover the rental fees. Instead, the device could be returned to the manufacturer, forcing the patient to either obtain a new one from the hospital or hospice, or pay the entire monthly rental fee out-of-pocket.

Cost: People who rent SGDs for the full 13-month rental period will pay 5% more out-of-pocket than if they had purchased the device.

Dedicated devices: Medicare currently does not pay for “non-medical” software that may be included on computer or tablet-based SGDs, such as email or word processing software. Therefore, these features are “locked” when a patient first purchases the SGD. However, once the patient owns the SGD, they subsequently may have the manufacturer “unlock” these additional features by paying a fee, which again is not covered by Medicare. Under capped rental, it’s possible that these additional features may not be permitted to be unlocked until after the 13-month rental period.

The ALS Association has actively opposed this change since CMS first proposed it in mid-2013. We’ve submitted formal comments to the agency (http://bit.ly/1h2e2X8), met with agency officials, and partnered with other organizations, industry leaders and Members of Congress to urge CMS not to make this change. Key Members of Congress have also expressed concern to CMS, including sending a letter (http://bit.ly/1lX98PA) to the agency in March.

Unfortunately, despite the widespread opposition from more than 170 organizations and Members of Congress, CMS has chosen to implement the new payment system —without making any changes.

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Continued

Updated: April 1, 2014

Medicare Coverage for Speech Generating Devices Next Steps The Association is currently working with our partners to pursue all avenues for changing the new payment system.

This potentially includes introducing legislation or amending existing legislation in Congress that would address our concerns with capped rental, working with Congress to exert additional pressure on CMS and possibly launching a public awareness campaign.

At this time, legislation to address the problems with capped rental has yet to be introduced in Congress. The Association is aware that some are urging advocates to promote H.R. 942 and S. 948 as solutions to the problems.

While The ALS Association strongly supports that legislation and endorsed the bills when they were introduced several years ago, neither bill currently would impact the new capped rental regulations nor change Medicare coverage policy— capped rental or otherwise — related to SGDs. The bills would create a separate benefit category for complex rehab technology (CRT), such as the customized power wheelchairs needed by people with ALS. The bills do not address capped rental, in part, because they were introduced several years before CMS proposed the new regulations and because people continue to have the option to purchase complex chairs — something The Association strongly urged Congress to preserve in 2009. Instead, the bills are designed to address Medicare’s coverage policies for CRT because those policies do not appropriately recognize the differences between complex durable medical equipment (DME) and standard DME. Your Help is Needed!

As the legislative and regulatory processes move forward, we will let you know when your outreach is most needed and can have the maximum effect. Unlike regulatory advocacy, where grassroots outreach generally is not an effective advocacy strategy, legislative advocacy involving grassroots campaigns can be extremely effective.

That’s because Members of Congress work for you and are elected by you. However, this outreach must be strategic, share a consistent message with our partners and be timed to launch when we have the best opportunity to realize success on Capitol Hill. Our goal is not simply to reach out to Congress or others for the sake of conducting a grassroots campaign. Rather, our focus is to ensure that a grassroots campaign accomplishes the goal of providing access to SGDs when and where people with ALS need them. If outreach is not strategic, focused and coordinated, we may lose the best opportunity to succeed.

As we work to address the problems with capped rental, if you or someone you know experiences any difficulty accessing SGDs or other DME, such as power wheelchairs or accessories, please contact your local ALS Association Chapter immediately. Chapter contact information is available here: alsa.org/community. If you do not have a local Chapter, please contact The ALS Association’s Public Policy Department at advocacy@alsa-national.org. The Association will actively provide assistance to anyone experiencing difficulties accessing these devices and will also share these difficulties with CMS officials and Members of Congress, so that they fully understand how policy changes impact people with ALS and why they must change.

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Director of Care Services:

Lori Banker-Horner

2014 – What a year!

It has been unimaginable, extremely exciting, challenging and frustrating—but filled with more HOPE than ever before. Of course, I’m referring to the phenomenon of the ALS Ice Bucket Challenge. No one could have predicted the outpouring of support, donations and, most of all, awareness. ALS, which was seldom mentioned previously, was suddenly on the tip of everyone’s tongue. In fact, I heard a statement that suggested the ALS Ice Bucket Challenge now has a firm place in history and pop culture and will be talked about forever. This really hit me, knowing how challenging it has been to raise awareness of ALS and to sustain that awareness.

As we work to continue this awareness, another important goal of the Chapter is to support our ALS Certified Treatment Center at Froedtert and the Medical College of Wisconsin, as well as the Milwaukee VA Medical Center. We also encourage the growth and development of other ALS Multidisciplinary Clinics throughout Wisconsin. For instance, we’re so pleased to be working with Dr. Michael Leone, Neurologist/ALS Specialist at Gundersen Medical Center in La Crosse, as he and his staff develop a monthly ALS Specialty multidisciplinary clinic. Dr. Leone, along with his staff, (including nurse coordinator Sheila Lawrie, BSN), is committed to the development of this clinic for serving individuals in La Crosse and the surrounding multi-state areas. There will be a Care Services liaison from the Wisconsin Chapter present and available at each clinic to personally meet with clinic patients, and to work with Dr. Leone and his team. We’re very positive about this new, growing partnership.

Our responsibility in Care Services and the Chapter as a whole is to keep this awareness alive—and to keep moving it forward—not simply by having people verbalize “ALS” but by truly understanding it and staying involved in the fight. One of the greatest results of the Ice Bucket Challenge that we’ve seen in Care Services is that individuals who were living with ALS, and neither knew about the Chapter nor were connected with it, began reaching out to learn more and to request assistance.

The Chapter exists for individuals with ALS and their families, and we welcome each and every person.

Most recently, the Chapter was pleased to welcome Barbara Newhouse, new President and CEO of The ALS Association National Office. Since starting her new position in June, (prior to the Ice Bucket Challenge phenomenon), Ms. Newhouse has been working exhaustively to get acclimated to the National Office and familiarize herself with each of the 38 Chapters around the United States.

Members of the Care Services staff, along with Wisconsin Chapter Board President Tom Kettler, were pleased to have Ms. Newhouse join us at Froedtert/Medical College of Wisconsin to meet with Dr. Paul Barkhaus, ALS Clinic Medical Director, and the certified center team—along with Allison Ebert, Ph.D., and Brian Link, Ph.D., who are both involved in ALS research at MCW. Melinda Kavanaugh, Ph.D., of UW Milwaukee was also present and shared her current research project involving “young carers” which she is conducting in collaboration with the Chapter. The visit culminated in a tour of the research labs at MCW and a meeting with Cecilia Hillard, Ph.D., Director of the Neuroscience Research Center at the Medical College of Wisconsin. The visit was definitely a positive “meeting of the minds” as we learned of the collaborative vision Ms. Newhouse has for the Association. We thank Ms. Newhouse and everyone involved for being part of this special, hope-filled visit. You’ll find some wonderful pictures of her visit in this issue of HopeLine.

Lastly, in the midst of taking pictures, it became clear that our Care

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Services Team does not have a photo of everyone together. So we needed to remedy that! We’re sharing this picture to let you know who’s available to you and to help put faces to the names.

ALS

Annual Holiday Family Gatherings

Meet your Care Services Team!

THE ALS ASSOCIATION OF WISCONSIN INVITES YOU AND YOUR FAMILY TO OUR

Annual Holiday Family Gathering DATE/TIME

Saturday, December 6, 2014 from 10:00am-1:00pm WHERE

Sheraton Milwaukee Brookfield Hotel 375 South Moorland Road, Brookfield, WI 53005 Join us for lunch, give-aways and a morning of fun!

Please RSVP with the number of adults and the number of children (12 years of age and under) Front row // left to right: Diane Fergot, Care Services Coordinator and Fox Valley Support Group Facilitator; Mary DeFrain-Jones, Care Services Coordinator/Froedtert ALS Clinic Social Worker and Milwaukee Area Support Group Facilitator; Janet Gauger, Care Services Assistant; Robin Stanczyk, Care Services Coordinator/Equipment Loan Coordinator and Milwaukee Area Caregiver Group Facilitator Back row // left to right: Carolynne Younk, Care Services Coordinator and Northeast WI Support Group Facilitator; Lori Banker-Horner, Care Services Director The Chapter Care Services Team is here for you. If you have questions, are in need of resources or support, or simply don’t know where to turn, please contact us at 262.784.5257 or lori@alsawi.org.

Wishing you Happy Holidays.

BY: Friday, November 28th, 2014 CONTACT: Janet at 414.831.3984 or janet@alsawi.org

We hope to see you there!

ADDITIONAL 2014 ALSA-WI HOLIDAY GATHERINGS Central Wisconsin ALS Support Group Holiday Gathering Monday, December 8, 2014 / 6:00pm – 7:30pm St. Luke’s Lutheran Church, Wisconsin Rapids, WI Deb Roberts: vegtales@wctc.net / 715.886.5860 Northeast Wisconsin ALS Support Group Holiday Gathering Wednesday, December 10, 2014 / 6:00pm – 8:00pm Location TBD Carolynne Younk: cyounk@alsawi.org 920.288.7095 Fox Valley ALS Support Group Holiday Potluck Tuesday, December 16, 2014 / 6:30pm – 8pm All Saints Lutheran Church, Oshkosh, WI Diane Fergot: diane@alsawi.org/ 920.279.4449 La Crosse Area ALS Support Group Holiday Gathering January 2015 / 3:00pm – 5:00pm Gundersen Lutheran Hospital, La Crosse, WI Connie Troyanek: cltroyanek@gmail.com 608.788.0670

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CAREGIVING TIPS & HINTS from alsa.org Take Care of Yourself When you’re providing care for someone else, it’s also important to take care of yourself—both physically and emotionally. Adequate personal time is a necessity too. Despite what you might think, it’s not selfish, and will actually improve your capacity to care for your loved one. So make your needs known and create time to do the things that are personally important to you.

Ask for Help Caregivers may not ask for the help they need to provide care for their loved one while also taking care of themselves. Have a “wish list” available when people ask what they can do to help you, and accept it when it’s offered. Recognize the limits of your own strength and endurance and help your loved one accept care from others.

Care Connection The Care Connection program is simple: it’s a network of community volunteers—such as friends, neighbors and members of community organizations like churches or other service groups—who provide help for the ALS patient and his or her family.

Often, they also give the caregiver a break from day-to-day responsibilities.

To learn more, visit alsa.org/als-care/ caregivers/care-connection.html, or call the Chapter and speak to a member of the Care Services staff at 262.784.5257 or 877.225-9997 Be Aware Of Depression Depression can strike anyone, especially caregivers. It’s the most common healthcare condition reported by family caregivers. Be aware of the early signs of depression and see your

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healthcare professional if you think you’re becoming depressed. You do not have to live with depression.

Value Yourself Caregivers do amazing work in caring for their loved ones. Recognize the important and good job you are doing and realize how valuable you are.

Caregiving is a never-ending job and perfection is an unrealistic goal. Don’t allow the common feelings of guilt and anger to keep you from seeing the value of your daily caregiving.

Manage Your Stress Caregivers can strengthen their coping and stress management skills by communicating their feelings and needs, setting limits and making decisions to do things for themselves.

Identify one or two people with whom you can speak freely about your needs and feelings. Professional counseling can be quite beneficial for caregivers who are trying to maintain their own sense of self in the role as caregiver. It is appropriate to set limits and expectations with your loved one, family and friends. Physical exercise, creative activities, humor and social/ family events are effective strategies for countering caregiver stress.

Educate Yourself Knowledge is empowering. Get as much information about ALS and caregiving as you can. The more you know, the better prepared you will be in proving care and support. Ask friends and relatives to help gather information and resources. Become an advocate for your loved one and for yourself. The Chapter Care Services staff is here to help answer your questions and provide information and direction.

Know You Are More Than A Caregiver In becoming a caregiver, some people experience a loss of the role and relationship they had with their loved one before the illness. It’s easy to see yourself as more of a caregiver than a wife, husband, parent or child. Identify ways to keep your personal and family roles and relationships alive. Talk about family events and news about children and grandchildren. Look at family photos together. Change the daily routines periodically, such as adding candles to the dinner table or playing some new music. Making the effort to retain the relationship you’ve had with your loved one, aside from your role as caregiver, will help you in coping with the multitude of changes that family caregiving poses.

Talk To Other Caregivers Caregivers who share resources and their own personal experiences report less stress and fewer problems.

Establish networks and support systems with other caregivers to share solutions to common problems and to talk with people who can understand firsthand what you’re experiencing. The Wisconsin Chapter has a Caregiver Support Group in the Milwaukee and Fox Valley areas. Caregivers also have a great chance to meet and develop connections with other caregivers at one of the general ALS Support Groups (See support group listing.) You can even talk to other caregivers via online forums such as thefamilycaregiver.org and caregiver.com.

Utilize Assistance Programs Take advantage of local, state and federal programs that support and assist caregivers. Contact a Care Services Coordinator at the Chapter to talk about what might be available: 262.784.5257 or 877.225.9997.

Support Groups & MEETINGS ALS Caregiver Dinner GROUP MEETING LOCATIONS MILWAUKEE AREA ALS CAREGIVER GROUP LOCATIONS Following are the meeting locations for our Milwaukee Area ALS Caregiver Dinner Outings in January and February 2015.

The group meets the fourth Thursday of the month at 7pm, with the exception of November and December. This is a special group for all individuals who are in a caregiving role for a loved one, family member or friend with ALS. It’s a chance to share with others, give and receive support, and obtain great information and tips in a very relaxed environment.

To RSVP for a dinner outing or receive more information, please contact Robin Stanczyk at 262.402.8148 or robin@alsawi.org NEW! FOX VALLEY AREA ALS CAREGIVER GROUP DINNER OUTINGS ALS Caregivers in the Fox Valley and surrounding area now have an opportunity to join others to share ideas, give and receive support and enjoy social time with others who understand. Diane Fergot CSW, Care Services Coordinator for the Fox Valley and Lakeshore areas, is the facilitator for this group and welcomes all individuals in a caregiving role for a family member or loved one with ALS to join. The group is currently scheduled to gather for dinner every three months at a local restaurant.

If you would like more information or have any questions, please contact Diane directly at 920.279.4449 or diane@alsawi.org.

Thursday November 20, 2014 Caregiver Holiday Dinner Jimmy’s Restaurant / Radisson Milwaukee West 2303 North Mayfair Road, Wauwatosa, WI 414.257.3400 Please note —this is the 3rd Thursday of November due to Thanksgiving.

Thursday, January 22, 2015 BRAVO! Cucina Italiana / Brookfield Square 95 North Moorland Road, Brookfield, Wisconsin 262.785.0858 Thursday, February 26, 2015 La Fuente 9155 West Bluemound Road , Milwaukee, Wisconsin 53226 414.771.9900

Wednesday, January. 7, 2015 – 6pm Good Company 110 North Richmond Street, Appleton, Wisconsin

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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: Highway 21 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

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

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

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

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

ADDITIONAL SUPPORT GROUPS AND MEETINGS 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

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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Care Services UPDATE

CARE CONNECTION

Are you feeling overwhelmed by the responsibilities weighing you down as a primary caregiver? When people ask, “What can I do to help?” do you just shrug and dismiss the question because you don’t know where to begin? Do you find yourself struggling to keep up with ALL the household duties in addition to personal cares with your loved one as ALS progresses? If this sounds familiar, you need a Care Connection!

In September 2012, The ALS Association National Office introduced this program to provide tools for families and friends to enable them to build a successful supportive caregiving network for their loved ones. In spring 2013, at the annual ALS Care and Research Symposium, we introduced this approach to our Wisconsin Chapter members. Our Care Services staff provides training and support to those who wish to implement this approach.

We encourage families who are living with ALS to consider using Care Connection to help manage care responsibilities.

Based on the model developed in the book “Share the Care” by Cappy Capossela and Sheila Warnock (1995), Care Connection provides a process to organize a team of volunteers to lend a hand and lighten the load. ALS presents unique care challenges, especially as the disease progresses toward later stages, and a Care Connection team can greatly ease the burden on the primary caregiver.

The key to a successful team is enlisting an energetic and well organized friend or family member to lead as the Care Connection Coordinator (CCC). Ideally, this person is not the primary caregiver but, rather, someone outside the immediate family who doesn’t have the responsibility for day-to-day care provision. With support from Care Services staff, the CCC works with the family to identify tasks/activities they’d like help with and to generate a list of potential volunteers to be Care Connection participants. These participants might be neighbors, friends, church members, anyone who is interested in helping out in some way. The CCC meets with the participants to provide information about the family’s needs and circumstances and gathers information from them about their skills and interests. The CCC creates a schedule of tasks and participants sign up; this can be done manually or using a special care support website like www.lotsahelpinghands.com/.

The Care Connection program provides the link between those who reach out to support the family and the ALS family who needs their support. By using this approach, the primary caregiver has more personal time to take care of his or her own needs, others are given meaningful opportunities to provide assistance, and the person with ALS benefits from increased interactions with people who care. It is truly Win-Win-Win! If you have any questions or would like more information on the Care Connection program, please contact Care Services Coordinator Diane Fergot at 920.279.4449 or diane@alsawi.org.

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CHAPTER EQUIPMENT LOAN CAN BRING FAMILIES TOGETHER

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he Wisconsin Chapter’s Equipment Loan Program assists individuals with ALS throughout the state through its loan inventories based in Oak Creek, Appleton and Eau Claire. But it doesn’t stop there! The equipment loan program has assisted individuals from other states AND countries who wish to visit family in Wisconsin to be able to do just that.

It can be cumbersome even overwhelming to travel with larger pieces of equipment. The Chapter Equipment Loan Program has been very happy to assist by providing needed equipment available in our inventory for a short-term loan for visiting family members—taking that pressure off. Unfortunately, not all equipment is available through the loan program and it is based on availability; however, we will do whatever we can to assist or attempt to find another resource for loan or rental if not available. “ With ALS, my brother Jim faces serious challenges when traveling. Through its Loan Closet, The ALS Association WI Chapter made his visit to Milwaukee for the Chasin’ a Cure Tailgate in July worry-free. The program not only saved him the hassle and expense of having to get bulky gear lugged across the country, The ALS Association WI Chapter made sure the medical equipment he needed was already waiting for him at the hotel when he checked in. The Loan Closet doesn’t just make life easier for ALS patients, it makes life better.”

– Brad Hicks

For our Chapter members traveling from Wisconsin to another state, the Chapter Care Services Team can assist you in determining if there is a Chapter near your location who may be able to help with equipment as well.

If you have any questions regarding the Equipment Loan Program, please contact our Equipment Loan Coordinator, Robin Stanczyk at 262.402.8148 or robin@alsawi.org.

MILWAUKEE WALK TO DEFEAT ALS CAN BRING FAMILIES TOGETHER

®

E

very year, thousands of people bring their determination, energy and passion to the Walk to Defeat ALS. It’s an opportunity to bring hope to people with ALS, to raise money for a cure and to join together to fight.

What started as a small group of concerned citizens has become a nation-wide campaign with more than 175,000 annual participants. Since 2000, the events have had continued growth and have raised over $159 million toward our vision — a world without ALS. The Milwaukee Walk to Defeat ALS has grown from 275 participants in 2007 to more than 5,400 in 2013.

All monies raised by the Chapter’s Walks to Defeat ALS stay in Wisconsin and benefit our Chapter’s Care Services programs. The financial cost to families of persons with ALS is exceedingly high. It is estimated that in the advanced stages, care can cost an average of $200,000 a year. The entire savings of families affected by ALS are often depleted because of the cost involved in the care of ALS patients.

OTHER COSTS: • The average cost of a customized wheelchair is approximately $25,000 • An electric patient lift between $3,500 - $4,000 • Communication devices range from $8,000 - $15,000 • Assisted living can cost up to $47,000 per year

Although the Chapter cannot begin to pay these costs for its constituents, our Care Services Team works with families to find support through a variety of services programs, and the Chapter’s Equipment Loan Program and Brian Trinastic Grant Program can help bear these costs.

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“YOUNG CARERS” STUDY Families represent the majority of caregivers in the United States, including those who care for a family member with ALS. Family caregiving is rewarding and fulfilling, but can also be difficult and stressful. Fortunately for adult caregivers, there are many programs and services to support them and provide resources for helping take care of their loved one.

However, for children in the home, this is not the case. Many help care for a family member with ALS, but receive little support or acknowledgment because of a lack of programs to support these kids. Whether they care for a family member, or simply want to talk to someone about what it’s like to have a family member with ALS, they need to be supported.

The purpose of this study is to gather information about the number of children who have a family member with ALS, as well as those who help provide care for one, so that the ALS Association can create support programs for them.

Dr. Melinda Kavanaugh, who for many years has worked with families affected by Huntington’s disease and other neurological disorders, is conducting the study. She’s now an assistant professor at UW-Milwaukee in the Helen Bader School of Social Welfare.

If you or your family members are interested in taking part in this study, please contact Dr. Kavanaugh by phone or email.

See flyer for contact information.

November is NATIONAL FAMILY CAREGIVER MONTH. Although we should always recognize and honor those who are in a caregiving role for a loved one with a long-term or terminal illness, November is set aside to ensure that they’re truly recognized for all they do. By the time you receive this newsletter, November may have passed but . . .

The ALS Association-Wisconsin Chapter wishes to extend its most sincere appreciation and thanks to all of the family caregivers in our ALS family.

You give so much out of love and caring, while often setting your own needs aside.

It’s so important that you know you’re truly recognized and are not in this alone.

The Wisconsin Chapter is here to support you.

We honor you today and always.

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BARBARA NEWHOUSE Visit President and CEO of The ALS Association, Barbara Newhouse, was kind enough to make a trip to Wisconsin. She met with our Board of Directors, care services and fundraising staff, and others who are responsible for making the Wisconsin Chapter so successful.

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THE BRIAN TRINASTIC MEMORIAL GRANT PROGRAM Flex and Transportation Grants

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t’s so nice to be able to report some good news in our fight against ALS. The ALS Association-Wisconsin Chapter is exceptionally happy to be able to announce The Brian Trinastic Memorial Grant Program, which provides some financial relief from costs associated with ALS for our Chapter members. Two different grants are offered under this awesome program and both are reimbursement-type grants:

Following Brian’s passing, Marcia and Dave continue to be heavily involved in the Chapter. Marcia is currently serving on the Wisconsin Chapter Board as Vice President of Patient Services, intimately involved in the development and administration of programs, including the grant program. Dave is the primary volunteer in the Wisconsin Chapter’s Equipment Loan Program. The Chapter’s grant program would not be in existence today if not for the commitment of Marcia and Dave.

In December 2010, the Chapter Board of Directors unanimously agreed that the Wisconsin Chapter Grant Program should be officially renamed The Brian Trinastic Memorial Grant Program.

1) Transportation grants help with the costs of travel and lodging associated with medical visits and Chapter events.

WHAT YOU CAN DO…

2) Flex grants provide assistance with costs related to medical equipment, home modifications, communication devices, ramps and various other needs. Since its inception in February 2009, The Brian Trinastic Memorial Grant Program has approved over 700 grants totaling over $280,000 to assist Chapter members.

This program was made possible through the generosity and commitment of Marcia and David Trinastic. Their son Brian was diagnosed with ALS at the age of 32. Marcia and Dave supported Brian, his wife Cindy and their young family throughout the progression of Brian’s illness, becoming full-time caregivers in the last months of his illness. Through all of this time, Marcia and Dave held a special fundraising event, “The Trinastic’s Fore ALS” golf outing, each August in Elkhorn. 100% of the funds from those outings were donated to ALS Patient Services at the Wisconsin Chapter. The funds grew with the popularity and success of “The Trinastic’s Fore ALS” golf outing and additional funds raised by employees of WE Energies, Dave’s previous employer, who donated funds from parking fees collected during two years at State Fair.

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The Chapter is committed to continuing the Grant Program, but we can use your help! Individuals and businesses who wish to donate to The ALS Association-Wisconsin Chapter are able to donate directly to The Brian Trinastic Memorial Grant Program and provide much needed assistance in maintaining the program for our Chapter members. 100% of all funds donated to The Brian Trinastic Memorial Grant Program are used to provide some financial relief for costs associated with disease through grants awarded to individuals with ALS.

HOW YOU CAN DONATE…

You may donate to The Brian Trinastic Memorial Grant Program online at the Chapter’s website, www.alsawi.org, by cash or by check. You may donate directly to the grant program as a memorial to a loved one or as a living tribute to someone special in your life. All of these donations will be acknowledged in the HopeLine newsletter as you can see in this issue. When donating, please be sure to indicate your donation is for The Brian Trinastic Memorial Grant Program in addition to identifying the person honored by your memorial or tribute. You may send your check to: The ALS Association-Wisconsin Chapter 3333 N. Mayfair Road, Suite 213 Wauwatosa, WI 53222

Thank You So Much for Your Support!

Thanks

TO THESE CHAPTER MEMBERS WHO WERE SO WILLING TO SHARE THEIR THOUGHTS ON THE BRIAN TRINASTIC MEMORIAL GRANT PROGRAM. It is important that all Chapter Members are aware of the Grant Program and what is available to them. The grant application process and criteria are available on the Chapter website: www.alsawi.org or by contacting Lori Banker-Horner at 414.817.1541 or lori@alsawi.org.

“ The Program helped with partial payment of a

ramp built in my garage. I used the ramp first with a walker and later with a motorized chair. The ramp freed me from being a prisoner in my home.

It allowed me to go out in the community to run errands and socialize, all of which would have been impossible without the ramp.

Marina Bendik, Waukesha

”

“ The ramp gets very slippery with rain, snow and

ice and without the sturdy railing, I could not safely get into our home. I used regular crutches, but I discovered the forearm crutches give me more stability and they work well in small places.

Due to ALS, we needed to move from our family home to a small cabin and adapt all, so we can live independently. Making all the changes has been stressful, and ALS Association and the Brian Trinsatic Grant have made many things possible and helped keep me mobile. God Bless all those who contribute helping families who live with ALS. Tom Jahn, Tomahawk

”

Renting the beach wheelchair allowed me to enjoy the ocean & sand with my family. The grant program reimbursed us for rental of the beach wheelchair and a commode during our vacation.

“ I was diagnosed with ALS in October 2012. Since that

time, I’ve had support from many care services offered by the Wisconsin Chapter of the ALS Association.

Among these is the grant program which assists with the needs of ALS patients and their families. The Transportation grants have reimbursed us for mileage incurred traveling to and from doctor’s appointments and from Chapter events such as an Evening of Hope and the Walk to Defeat ALS. The Flex grants helped pay for adaptive and medical equipment which have not been covered by our insurance. We have been so grateful for the helpful nature and personal attention of the team at the Chapter and highly recommend other families to connect with them. The staff has genuine concern and a passion for every one of us who has been touched by this disease.

Sharon Baur, Oconomowoc

”

Walk ToDefeat ALS Milwaukee

Thanks to your efforts, we have raised more than $400,000 for the Milwaukee Walk/Run to Defeat ALS! This was the most successful Milwaukee Walk/Run to Defeat ALS yet, and each and every dollar will make a major difference to Wisconsin ALS patients and their families. Because of you, we’re thousands of steps closer to a cure.

Your team page will be up and running and accepting donations until December 31. Please help us get the word out and stick with us in this fight.

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2014 APPLETON Walk to DEFEAT ALS The 2014 Appleton Walk to Defeat ALS produced record-breaking numbers. Thanks to the 2,000 walkers and all those who donated, we raised more than $180,000 to help Wisconsin ALS patients. We especially couldn’t have done it without the Weber family and friends, who worked all year to make this walk a knock out.

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The money raised for the event goes directly to Care Services to benefit Individuals with ALS and families in the State of Wisconsin.

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2014 PLATTEVILLE Walk to DEFEAT ALS The 2014 Platteville Walk to Defeat ALS had its best turnout ever and brought in more than $47,000 that will benefit Wisconsin ALS patients.

The morning was filled with pancakes, 80+ raffle prizes and an energy level that left every person feeling hopeful. Thank you to the organizers and all of those who walked with us.

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Morgan Burnett Story

NFL

By Natalie Jansky | Photos by Jordan Johansen

The Brotherhood N o one was surprised when Green Bay Packers quarterback Aaron Rodgers completed the Ice Bucket Challenge.

He was one of the first Wisconsin star athletes to do so and kept the momentum going by nominating others, including his teammates.

Packers safety Morgan Burnett did it with his son. Another safety, Steve Gleason, did the challenge naked. If you knew Steve, you’d know that’s no surprise either.

Gleason is a 37-year-old Spokane native and former NFL safety.

He played for the Indianapolis Colts before landing in New Orleans, where he’s now considered a hero— not just for his famous blocked punt in the first post-Katrina Saints game in 2006, but more so because of what he’s done since his ALS diagnosis in 2011.

Steve has been trying to break 75 years of silence about ALS. And only people who know what an especially cruel disease it is understand that this silence is unacceptable, which is why awareness is so important.

That’s where the aforementioned Morgan Burnett comes in. Midway through the 2014 season, the 25-year-old Packers safety was one of the NFL’s leaders in solo tackles. He’s on a freshly sealed four-year deal, and he not only plans to make a difference on the Packers, but also on a team he only recently learned about — The ALS Association Wisconsin Chapter.

A large part of what the Chapter does is raise public awareness about the disease so that people take action to help unlock a cure.

And until one is found, we need every possible voice speaking up for those who can’t. Which is what Burnett intends to do as the Wisconsin Chapter’s Packers spokesperson.

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“When I was offered this opportunity, I didn’t have to think twice,” Burnett said. “It’s a great cause and I’m excited to be a part of it. I want to help in any way that I can.”

Although Burnett does not have a personal connection to the disease, two of his mentors do — former NFL players and current Packers coaches Darren Perry and Sam Gash. Perry is in his sixth season as the safety coach and Gash is in his first as the assistant running back coach. Both men, who were college roommates at Penn State University, know their fair share of ALS victims — including Gleason.

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Gash’s predecessor at Penn State, Steve Smith, was diagnosed with ALS in 2002. Kevin Turner, who entered the league with Gash as a member of the New England Patriots, was diagnosed in 2009.

Gash also played with two other ALS victims — O.J. Brigance and Gleason.

While Perry also took the field with and against these players, he has an additional connection to ALS. One of his close friends is watching his son deteriorate from the disease. So when Perry and Gash were asked to foster a relationship between the Packers and the Wisconsin Chapter, they were quick to help. So was Burnett.

“It’s Morgan’s work ethic that really sets him apart from others, and I knew he would bring the same determination in the fight against ALS,” said Perry. “Morgan is not only a great football player, he’s also a tremendous human being.

He symbolizes the rich tradition of a Green Bay Packer on and off the field.”

More than 1,000 ALS advocates got to experience a Packers tradition last August, when the Packers invited the Wisconsin Chapter to be their official community guests at the annual Packers Family Night.

These ALS advocates made up a sea of red in section 127, and watched as 40 Wisconsin Chapter representatives formed the Packers

“

I t’s Morgan’s work ethic that really sets him apart from others, and I knew the case would be the same in trying to make a difference in the fight against ALS.

Ambassador Line while the players took the field. It was unforgettable.

It also showed the impact the NFL brotherhood has on the fight against ALS, and was one of many examples throughout this past year, including Saints owner Tom, Bensen’s $5 million donation to the Team Gleason House for Innovative Living. Just a few months later, Team Gleason launched a campaign called Answer ALS. Gleason hopes it will not only aid ALS patients, but will also make the seemingly impossible, possible.

Which he made perfectly clear in quoting Muhammad Ali: “Impossible is just a big word thrown around by small men who find it easier to live in a world they’ve been given than to explore the power that they have to

”

change it. Impossible is not a fact. It’s an opinion. Impossible is not a declaration. It’s a dare. I am daring capable individuals to change the world we live in. I’m daring the world to step up and help solve ALS.” Whether they had lined up with him or against him on the field, NFL players and coaches have joined Team Gleason and the Wisconsin Chapter to make sure ALS is no longer ignored. And we’re extremely proud that Morgan Burnett is one of them.

While Burnett and Gleason never played together on the field, they share a similar goal — to make the impossible, possible. This was made clear in their meeting at Gleason’s New Orleans home a few weeks ago, when Burnett met with Gleason to learn more about the disease and what’s being done to find a cure.

“Awareness is critical for any disease or issue to receive needed attention and funding,” Gleason told Burnett. “The Ice Bucket

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“

Impossible is just a big word thrown around by small men who find it easier to live in a world they’ve been given than to explore the power that they have to change it. Impossible is not a fact. It’s an opinion.

Impossible is not a declaration. It’s a dare.

I am daring capable individuals to change the world we live in.

I’m daring the world to step up and help solve ALS.

”

Challenge was a unique way for many people to participate and to be creative in their own way. While it was incredible, it was just one event for a disease that has needed attention and funding for more than 75 years.”

Burnett plans to get the word out about ALS so people have a better understanding of what it is. The way he sees it, he’s helping his brothers.

“The NFL shield is strong,” Burnett said. “We bond with our competitors on the field just as much as we do with our own teammates. We look out for one another.”

When Burnett asked Gleason what should be done on the heels of the Ice Bucket Challenge, Gleason said, “It is up to us to maintain that momentum.”

And that’s exactly what Burnett intends to do.

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ALS patient Jim Eutizzi came out to see Gleason, his dear friend who sent him and his son to Italy a few years ago, and to meet and thank Burnett for joining the Chapter’s team.

ALS TEAM GOES TO NOLA The Wisconsin Chapter’s fundraising team— (from left) Natalie Jansky, Susie Reed and Melanie Roach-Bekos— met up with Burnett (left) and Perry (right) after the game for one last chat.

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PACKERS FAMILY NIGHT

The 2014 Packers Family Night was an unforgettable day. More than 1,000 friends and family members came out to Sammy’s Pizza for a tailgate party before the Packers’ scrimmage on August 2nd. Section 127 in Lambeau Field never looked so good, as almost every single person in it sported one of our red t-shirts. Thanks to the Green Bay Packers, Coach Darren Perry and Morgan Burnett for all they did to make this happen.

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TRICKETT’S VIDEO WINS AWARD Some of the work Traction Factory created for our local chapter won some hardware (literally) at the 2014 Adworkers Show, one of the Midwest’s premier marketing award competitions. But the agency is quick to say the work they do for us isn’t created to win awards, it’s designed to help raise awareness and funds. Traction Factory extends a special thanks to Trickett Wendler, Rob and Mary Pat Fischer (filmmaker), John Elmendorf (Wonder Wonder, editor) and NOLA (color correction) for making Trickett’s video a reality.

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UPS Check Presentation

For years, UPS has been an outstanding partner in the fight against ALS. Our UPSers are unbelievably dedicated to the cause, and willing to help in any way, shape or form. They are kind, generous, hard working people, and we are lucky to have them by our side. They not only donated hours upon hours of their time to help out, they also presented us with a check for $10,000. Thank you, UPS!

In Our COMMUNITY BOESCH Bowling Tournament Mike Boesch battled ALS for five years, and during that time the association fought right along side of him and his family. As a way to give back, Mike’s wife, Jane, and their kids created the Mike Boesch Memorial Softball Tournament with hopes that the money raised would aid in finding a cure. After 12 years, they decided to switch from softball to bowling. The 2nd Annual Mike Boesch Memorial 9 Pin Bowling Tournament was even more successful than the first. Many thanks to the Boesch family and friends for their continued support. Get more information at mikeboeschmemorial.wordpress.com.

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TWELVE-YEAR-OLD KENDRA BAUER wrote this poem last summer in memory of her Grandma Carol who passed away from ALS six years ago before turning 70 years old. The two enjoyed baking, reading books and visiting with one another. Thank you for sharing your beautiful poem, Kendra.

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My Journey

By Robert Rakers

July 2014

with ALS.

“W

hat in heaven’s name is happening to my legs?

Why is walking getting more difficult? Why do I stumble?

Why do my legs hurt? Why do my leg muscles twitch involuntarily?”

These are questions that arose in my mind approximately two years before being diagnosed with ALS. During this two-year period, we investigated several possible causes of my leg pain – including my many years on high cholesterol medication and exposure to radiation during treatment for prostate cancer. Both were dismissed by our family physician, who diagnosed my symptoms as restless leg syndrome. After his prescribed medication proved ineffective, I was referred to a rheumatologist. A few visits later, I was then referred to a local neurologist for further evaluation, including EMG testing.

During this period, I also underwent a spinal tap, MRI studies of the cervical and lumbar spine, and multiple blood studies. All of this testing enabled them to rule out Parkinson’s Disease, Guillain-Barre Syndrome and Multiple Sclerosis. At that point, all signs were pointing toward ALS, but it wasn’t conclusive since I only demonstrated lower motor neuron symptoms.

The fact is, an ALS diagnosis can be very elusive until both upper and lower neuron involvement is present. That’s why our family physician, the rheumatologist and even a neurologist at a major Chicago teaching facility were unable to confirm a final diagnosis.

My wife and I already knew the answers to these questions, but we still had to ask them.

You should also address some practical matters. Start by evaluating how well your home will accommodate mobility needs, such as wheelchair access, patient lifts, bathing and toilet facilities, adaptive equipment, etc. Should you remodel your home, move to a house that’s handicapped accessible, or enter an assisted living facility?

Other important considerations are preparing a living will, durable power of attorney and power of attorney for healthcare. This will make your future care plan much easier for those who will be caring for you. And although it’s not easy, you should also prepare to let someone you trust handle your financial affairs—keeping no secret of where your savings, investments, banking and other financial information is stored.

Throughout this period, my condition took me from walking

It’s also crucial to keep a very positive attitude, rather than

The Chicago specialist referred me back to the neurology department at the Medical College of Wisconsin and Froedtert Hospital for more testing. On August 17th, I heard the words, “You have ALS.” This immediately prompted a new series of questions, such as, “Are you sure? Could it be something else? How did I get it? How is it treated? Is there a cure? What’s the prognosis?”

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with a cane to using a walker.

Followed by an electric scooter and, ultimately, a power wheelchair, which is my current status.

So there’s the story of my diagnosis of this horrible disease. Along this path, I’ve learned many tips which I would like to share with new and future ALS patients.

First and foremost, always think to the future and not just today. Our disease is progressive, so your condition will never be better than it is today.

becoming negative about what has happened to you. Remember that family and friends will tire quickly of continual negativity. These people will be very important to you as your disease progresses, so don’t risk turning them off. You’ll also soon learn who your true friends really are as you become more and more incapacitated.

When requesting and selecting medical equipment, talk to physical therapy and rehabilitation specialists who know what you’ll need in the future. Select the equipment supplier carefully, as they too can guide you throughout the process.

If you’re fortunate enough to live in an area that has an active ALS chapter, like we have in the greater Milwaukee area, take full advantage of their many helpful programs.

Many even have a “Loan Closet”, where donated equipment used by previous patients may be available for your use, rather than having to purchase items not covered by insurance.

The time may come when your daily care and support become too much for your spouse and family to provide. So I urge you to begin interviewing in-home care providers early in your journey. And if a home agency you choose isn’t working out, don’t hesitate to choose another one.

On a physical note, your energy level will steadily decline over time, and things that you like to do may become difficult or impossible.

I suggest you save what energy you have for things that you consider the highest priority in your life.

If you still have the desire and energy to travel, you should get on with it quickly.

Because again, you’ll never be any better than you are today. For example, my wife and I spent two beautiful weeks in Honolulu while I could still get around, and we have absolutely no regrets. We also spent a long weekend in San Francisco as our last major trip. Again, no regrets!

One of the most sad and disappointing issues we had to face was selling our 160 year-old farm house. With very narrow doors and second-floor bedrooms and bathing facilities, it was totally inappropriate for a handicapped person. It was also hard to have to give up driving and to relinquish the freedom it brought. It was a wise but difficult decision.

As I look back, my wife and I have many fond memories of our 58 years together. In addition to my successful business life, we’ve had the opportunity to travel to many countries and cover most of the United States. We have three self-sufficient and successful children, as well as six living (and one deceased) grandchildren who have given us many pleasures over the years. We have countless friends, many of which go back 40 and 50 years, who we still see today.

We’re very thankful for all these blessings, and for God allowing me to reach the age of 75 before acquiring ALS. Even as I continue down this rough ALS highway, approaching the light at the end of the tunnel and knowing the future isn’t bright, we still consider ourselves extremely lucky.

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HITTING FOR A CURE Ferg’s Fighters hit for a cure on August 2 at Kettle Moraine Golf Club in memory of Paul Schmitter. Thanks to the event’s organizers, Magda and Dawn, and all the others who helped to make it such an incredible day. We know the thousands of dollars raised for research will make a major difference in our quest to find a cure.

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2014 WAC “CHIPS IN” The 2nd Annual WAC “Chips In” event at the Ironwood Golf Course was as fun as the new and returning golfers had expected it to be. Speaking of a new “Chips In” golfer, we’d like to give a special thanks to former Green Bay Packers strong safety LeRoy Butler for attending the event. And, of course, many thanks to the WAC and all of those who made it happen.

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Thank you so much for responding to the Ice Bucket Challenge with donations to our Chapter. We put 100 percent of the donations to great use. Half of them are funding cutting-edge research projects, while the other half is funding our Care Services’ programs that help Wisconsin ALS patients and their families. You made such a difference.

And we hope you will continue to do just that. After all, ending this horrific disease is going to take all of us working together. We have Chapter and community events year-round, two of which include our Evening of Hope gala on March 7 and Chasin’ A Cure Tailgate Party on July 17. To see what else is happening, take a look at page 6.

Again, thank you for supporting our organization and this vital cause. As a member of the ALS Wisconsin family, you’re not only improving others’ lives, you’re also enriching yours.

Sincerely,

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MANITOWOC WALK The first-ever Manitowoc Walk in honor of Bernette Seiler was a major success despite quite a few raindrops. More than 350 participated and helped raise more than $20,000! Save the date for the 2nd Annual Manitowoc Walk on August 29, 2015.

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ALS POKER RUN This is one of our favorite groups of people – the Apple River Riders in Amery, Wisconsin. They ride in rain or shine to help those living with ALS. The past four years, they’ve raised thousands of dollars to do just that. And they’re already planning for next year. The 5th Annual ALS Poker Run is scheduled for August 15, 2015.

ICE CREAM RIDE for ALS Deb Heinzelmann and her family make each Ice Cream Ride for ALS better than the last. The event is in memory of Deb’s husband, “Big Ed.” While Deb and her kids were Ed’s first love, ice cream was his second. Save the date for the next Ice Cream Ride for ALS on August 23, 2015.

Anything with wheels is welcome. Get more information at debheinzel3.wordpress.com.

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HORNY GOAT FIRE & ICE EVENT Our friends at Horny Goat Brewing Company know how to throw a party that raises money for ALS research. This one included a dunk tank, Fireball Cinnamon Whisky and a room full of Packers fans. Thanks to Horny Goat for being an amazing partner.

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Marilyn’s Journey

By Mark Iczkowski

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ne night my wife mentioned to me that her right foot felt “funny.” She said it felt as if it wasn’t there!

We set up an appointment with her primary doctor who ran a few tests, but she referred us to a neurologist. After our initial visit he recommended physical therapy, which we attended for only two sessions — my wife said it was too painful, which we thought was odd.

We told the neurologist about our decision and he scheduled a series of head, neck and spine MRI’s and an EMG. He had done some physical tests and noticed there was no strength in her right foot. After he reviewed the MRI’s and EMG, he said she had “drop foot”, caused by a narrowing in her neck, putting pressure on the nerves that control the legs and feet.

His recommendation was to get a fitted leg brace to lift the foot as she walked.

We ordered the brace and she wore it morning, noon and night, but there was still no feeling in her foot. We revisited the same neurologist about three months later and told him there was no change. He explained that it takes time for pinched nerves to heal and sent us on our way.

Neither of us was satisfied with that diagnosis, so I made an appointment with an orthopedic surgeon who had operated on me in 2009. I asked if he could read my wife’s MRI’s and see where the pinched nerves were. He and his PA did the same physical tests as the other doctor, and after reading the MRI, said he saw no pinched nerves. Frustration was starting to surface and we asked for better direction. He referred us to two more neurologists, who read the MRI’s and did all the same tests, procedures and EMGs. After a full day of testing, one of the doctors sat us down and told us that it could be MS or ALS! Although she said nothing, I know my wife was as floored as I was. Two days later we were given the name of Dr. Barkhaus, the chief ALS specialist at Froedtert Hospital.

We met with Dr. Barkhaus and his team, and once again my wife had to endure the same battery of tests as before.

Through all of this testing, she never once complained. At day’s end we met with Dr. Barkhaus and he did indeed confirm it was ALS. We were introduced to the ALS team and learned of all the support they had to offer. We met with Dr. Barkhaus privately, told him we wanted a second opinion, and with his referral, set up an appointment with the Mayo Clinic. After three days of blood testing for Lyme disease and a myriad of tests, (and yet another EMG), the Mayo doctor confirmed it was ALS. The drive back to Muskego was very quiet. Hardly any words were spoken between my son, my wife and myself. I know that each of us was silently praying that the doctors had missed something. We eventually set up a series of meetings with Dr. Barkhaus and the team.

there would be no extraordinary measures taken to prolong life. So on our next visit to Dr. Barkhaus, we explained that there would be no feeding or breathing tubes. He accepted our decision and wished us well.

I quit my part-time job in October of 2013 and became a full time care giver. It was the best decision I ever made! In May of the same year, my son Mark, his wife Kim and our two grandsons, Elliot and Brody, moved in with us while their new house was being built. The old saying that things happen for a reason is really true! My wife Marilyn got to see our grandsons every day. We had always had a dinner night each week, but now we could do it every day. Marilyn was so happy! We celebrated all the birthdays and holidays, trying to keep things as normal as possible.

Although in the beginning she could transfer from bed to wheelchair, it became increasingly harder for her to come to the table. She was also losing her appetite. In January of 2014, we celebrated her 63rd birthday with a Packer party. Although she spent the day in her wheelchair talking and cheering on the Packers, you could tell her strength was waning, and she continued to have no appetite. On March 6th we celebrated our 43rd wedding anniversary.

From the onset of this disease, never once did my wife complain or ask “Why me?” I know she was beginning to need more and better care than I could give her, so on March 8th, my sister-in-law and I met with Carrie Bell from Allay Home Hospice. She came for a home evaluation two days later and said my wife was indeed ready for special care — and Marilyn felt the same way. March 11th was her official start of home hospice.

Those who dedicate themselves to hospice care are true angels. I can’t say enough about the care and compassion they give not only to the patient, but also to the spouse and family.

This was a four-year journey for my wife and family. Marilyn was my beautiful partner, a loving mother and an adoring grandmother. She met this disease head-on with courage, grace and dignity.

She was called home March 19, 2014.

Back in 2001, I had a heart valve replaced. Prior to the surgery my wife and I had agreed that if something should go wrong,

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Contributions & MEMORIALS MEMORIALS Susan Allen James Allen Ken Bukowski Edward Kramar Obma Foundation Joseph Arcara Elaine Franzen Kathleen Maffet Maureen Mcguire Kimberly Nelson Margaret Raclaw Raymond Bauer Carl Bauer Rebecca Bell Barbi Olivia Conrad Joseph Brown Delores Coopman Mary Brunner Kathleen Zwettler Philip Cody Marla Mitchell Clair Culver Jack Safro Toyota Virginia Devine Annette Udulutch Elaine Dings Elders Service, Inc. Mark Dray Shirley Goplin Harvey Ebben Delores Ebben Rita Engel Joan Sachs Jerry Falish Paula Falish Jerelyn Felt Robert Birkholz Carolyn Duncan

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Walter Felt Natalie Geyer Kathleen Harrison Colleen Hoeth Michael Klauke Julaine Mcgarry Janice Schmitt Joanne Schnell Mary Welch Constance White Ruth Zellmer Debra Fricano Donna Siegworth Mary Gottschalk Robert Gottschalk Ralph Haase Susan Kelley Mildred Heberer Roger Heberer Cecilia Held Robert Held Susan Pallister Scott Herman Sara Stratman Ralph House Jerome Bores Stephen Hrin Mary Meeusen Robert Hurwitz Nancy Minkin Marilyn Iczkowski Kay Bunting Michael Carney Barbara Farnworth Mary Foreman Lora Goedland Helen Grisar Lester Helgeson Mark Iczkowski Lucille Iczkowski Kim Iczkowski Matt Kawczynski

Mark Kleist Clifford Kohl Charles Kudy Andrea Lewandowski Francis Lewandowski Desty Lorino North Shore Bank Angela Peardon David Rahkonen Emily Raschka Barbara Schrubey Sharon Selz Julie Shaw Thomas Sigmund Thomas Trokan Deanna V. Sowlles Curtis Justman Christopher Justman Bruce Knaack Susan Knaack Bridget Keller Carol Mccoy Phillip Ketter Joan Buerger Tani Ketter Gary Kloss Scott Leannah Kathy Liesch Global Impact Pitney Bowes Ray & Blair Macarthur Bonnie Eastman Susan Marmurowicz Gena Fischer Mary Beth Kilian Jon Matters Karen Matters John Nordengren Carol Nordengren Jack Norman Cynthia Norman

Margaret O’donnell Terese Kalawa Pat O’gara Mary O’gara Dennis Pamenter Gary Dreyfus Arlene Phalin Barbara Tellefson Linda Polan Julie Sklaver Jerry Rossi Rhonda Rossi Gregg Schleicher Julie Schleicher Christine SchleicherNeuburg David Schmitter John Wichman Paul Schmitz Phillip Ammerman Susanne Auer Betty Bachmann Mary Coraggio Lorna Culver Janet Defnet Pat Dowdakin Christine Fogarty Marlene Heidenreich Gene Hickey Richard Hoppmann Dana Janecek Teresa Jankowski Christopher Kadow James Kirchner Ilene Kronschnabel Nova Laurent Kimberly Leininger Gail Lentz Karen Lorenz-Conlin Lois Mathews Cary Mcgroarty

Phyllis Mcgroarty Mary Nelson Diane Ordway Otto Radke Christine Ryerson Cindy Schmitz Michael Schnuck Denise Schueller Vern Schuenke Marlene Schwenner Marti Sievert John Strobel Donna Truelove Delbert Vanstone Kristine Waal Mark Schuler Richard St. John Ronald Schwalbe Kris Hansen Patricia Skrade Larson Melinda Skrade Robert Snyder Nancy Snyder Ronald Soppa Connie Soppa Lynn Spiess Margaret Agnew Judith Sterland Kathryn Keppel Thomas Kettler Playford Thorson Joanna Keene Kathryn Thorson Diane Voith Fred Voith William Weihmeir Mary Weihmeir Gerald Wendelberger Jackie Wendelberger Gary Wickman Janice Wickman

Prescott Wurlitzer Gayl Franz Heidi Wurlitzer Eugene Ziolkowski Sherry Fox Dennis Kramer Rita Ziolkowski

HONOR TRIBUTES Wayne Bender Jessica Bender Robert Bonine Cora Gianoli Romel Cooney Irene Anstett James Eutizzi Alice Wolfe Gerald Friebert John Killian Scot Imig Jeannine Gores Lori Isch Richard Bos Debra Pisarek Robert Radonski Bob Rakers Trudy Dougherty Benjamin Reese Patricia Abrahamson Harry Slawter Sarah Gibson Carolyn Schweitzer Ann Pierre Laurel Streich Susan Torgerson Carolyn Swenson Robert Worth

DONATIONS Doris Baum Sarah Becker The Benevity Commu nity Impact Fund Barbara Berndt Michelle Birschbach Bishops Bay Country Club Donna Bondow Braun Building Center Bright Ideas Learning Judy Bromley Janice Brunner Jeffrey Brunner Bullard Children’s Dentistry James Burton Evelyn Carstens Chris Brunner’s Body Shop Patricia Clark Country Visions Russ Darrow Kaliope Domoras Nanette Elder Federal-Mogul Manitowoc John Foley Gary Francar James Godlewski Kay Hamilton Hartman’s Bakery & Pastry Shop llc Linda Haupt Waldemar Hesselbein Diane Hyland Pam Isenberger J&S Pizza Garden Jagemann Stamping Dick Jirik

Karen Johnson Susan Johnson Martha Klubertanz Janet Kneusel Delores Kreisler Jenny Krueger Michael Kubly Lakeland Landscape Service Michael Lambert Henry Leibl Sue Loeh Richard Lohr Rosemary Looney Michelle Luckiesh Marcus Corporation Foundation, Inc. Helen Martin Cindy Mcbrady Jane Mcbrady Susan Mcbrady Laura Mcvann Greg Meidl Jean Micke Nancy Minkin Nicholas Hansel Agency Douglas Olstead Oshkosh Community Credit Union Donna Ostrowski Marjorie Overturf Joelle Parkhurst Lori Paulin Sue Paulson James Perkins Cathleen Peters Sharon Plucinski Becky Pogacar Karen Posorske Gail Prange

Qualcomm Carole Ramsey Red Arrow Products Brett Redner Signe Redner Kathleen Ricker Rlj Dental Sc Salon 708 Llc Barbara Schade Paul Serdynski Lyndall Siehr Laura Sims Molly Skifton Mary Skwierawski Patricia Solfest Soodsma Insurance Agency Marcie Stark Sunshine Account Middle School Taylor Made Express Melisa Telindert Marlies Tenhaken Julie Teske Judy Thesing Janice Thostenson Tim Terp Agency Elizabeth Tobolt Traction Factory Llc Vandervart Concrete Karen Vojtas Wales Elementary Teachers Ruth Ann Wardinski Joseph Warner Sarah Watkins James Wayner West Bend Mutual Insurance Company Alice Witz Anne Yuhas

THE BRIAN TRINASTIC GRANT PROGRAM Doug Posorske Karen Posorkse Shootin For A Reason Janis Brandt Jeffrey Brunner James Godlewski Kay Hamilton Karen Johnson Cindy Mcbrady Patricia Solfest Julie Teske

NOTE: These donations were recorded from July 1, 2014 thru September 1, 2014.

Donations to our Walk can be found on our website at www.alsawi.org at the end of December.

Some donations are still being tabulated, so if your contribution is not listed, it will likely be listed in the next issue.

HIGHLIGHTED NAMES: These contributions have been made either in honor of current patients battling ALS or in memory of patients who have passed.

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In MEMORIAMS

Honoring the lives and legacies of those who’ve made an indelible

David Brueggemann

Paul Schmitz

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In MEMORIAMS

impact on the ones they’ve left behind.

Thomas Cherney

Emil Stauber

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Steven Delong

Martin Thom

MEMORIAM In MEMORIAMS REMEMBERING

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The Chapter will be holding a special service the evening of February 12, 2015 at Cross of Life Lutheran Church in Brookfield to remember and celebrate our Chapter members who lost their lives to ALS.

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Leslie Dessain

Dana Toraason

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Rita Engel

Jason Warner

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Jerelyn Felt

Joseph Warren

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Kathy Goldstein

David Zalar

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MEMORIAMS In MEMORIAMS Jim Hennig

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Allan Kohl

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Allen Laney

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More information will be sent out as planning is completed.

Rogaciano Lopez-Medina

We hope you will join us on this special evening.

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MEMORIAM ‘

Rosa Mata

Daniel Michaels

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Dennis Pamenter

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NON-PROFIT ORG U. S. POSTAGE

THE ALS ASSOCIATION Wisconsin Chapter 3333 North Mayfair Rd Suite 213, Wauwatosa, WI 53222

PAID

MILWAUKEE, WI PERMIT NO. 3815

CHANGE OF ADDRESS: If you’ve recently moved, give us a call or send us an email and let us know your new address. If you no longer would like to receive this newsletter or other Chapter mailings, please help us save on costs by calling 262.784.5257 or email us at info@alsawi.org and let us know. Thank you.

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