HopeLine Magazine - Spring 2014

2014 A SEASON OF HOPE S P RING

INSIDE:

Save the Date: Walk to Defeat ALS® 06 / Evening of Hope 08 / Jim Eutizzi Honored 36 / Boesch Bowling Tournament 42

Raw & Beautiful Transformations TRICKETT WENDLER’S STORY UNFOLDS PAG E 28

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 IT’S TOO OUTDATED.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

An Evening of Hope 2014 PAGE

08

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

12

Support Groups & Meetings

15

Care Services Update

16

In Our Community

41

Contributions & Memorials

44

In Memoriams

46

The Trickett Wendler Story PAGE

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

Jim Euttizi Receives the Lawrence A. Rand Prize PAGE

36

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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

EXECUTIVE BOARD OF DIRECTORS President: Thomas Kettler Vice President: Joanne Blaesing Treasurer: John Schleicher Secretary: Danielle Tonelli Mathai

throughout Wisconsin. We are immensely thankful for the time, talents and passion each selflessly puts toward the cause.

BOARD OF DIRECTORS Benjamin Becker Holly Blake Mary Brennan Druml Dave Hanneken Laura Hinrichsen Jan Kaufman Kathryn A. Keppel Mary Beth Schlecht

STAFF Executive Director: Melanie Roach-Bekos Special Events Manager: Susie Reed Fundraising and Social Media Manager: Luz Medina Marketing Coordinator: Natalie Jansky Director of Care Services: Lori Banker-Horner, LPN Care Services Coordinator: Robin Stanczyk, RN Care Services Assistant: Janet Gauger Social Worker: Mary DeFrain-Jones Care Services Coordinator: Carolynne Younk Care Services Coordinator: Diane Fergot, CSW

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Executive Director:

D

ear Friends, Happy 2014! The New Year signals new beginnings, new resolve and new hope. Thank you for your ongoing support as we search for new ways to combat ALS as well as promote services and resources for our patients and families.

We hope you’ve noticed our new look.

The ALS Wisconsin Chapter gives a big thank you to Traction Factory for taking us on as a pro-bono client and making our brand stronger than ever. Throughout the year, you’ll see a new look and stronger marketing that will increase ALS awareness.

I believe the passion and creative talents of Traction Factory will make 2014 the strongest and most successful year yet for our Chapter.

We’re proud to share the news that Jim Eutizzi, our entrusted colleague and tireless ALS supporter, has earned the prestigious ALS National Lawrence Rand Award. He’ll receive it in San Diego in early February.

In addition to our updated look, we have many projects in the works for 2014. This year’s Evening of Hope is scheduled for March 8th. Having raised over 3.4 million dollars for ALS research since its inception, it’s our signature event. Please consider a table of family, friends and co-workers.

We promise a lovely evening. Tickets can be purchased online at: beatals.org. For more information, please contact us at: 414.831.3986.

Melanie Roach-Bekos

Our online Evening of Hope pre-auction begins March 1, 2014.

You can preview this year’s amazing, one-of-a-kind items at bidpal.net/alsawisconsin Please look for details on our new 2014 La Crosse Walk to Defeat ALS® to be held in June 2014.

The following 2014 Walk dates have been confirmed: Janesville: May 10th Platteville: September 27th Appleton: September 27th Milwaukee: October 12th Although our annual Walk to Defeat ALS® events seem a long way off, now’s the time to register your team at: walktodefeatals.org. The Walks are the Chapter’s most efficient money and awareness raisers, also serving to honor current and past ALS patients. Visit alsawi.org or contact the Chapter’s office with questions or comments.

We’re proud to announce we’ve again partnered with the Milwaukee Brewers and will be hosting our 3rd annual tailgate event on July 11, 2014. Please mark your calendars and watch for further details. Also, we hope to have confirmed Wisconsin legislation approved on our requested ALS license bill, which will make it easier to show ALS support and promote awareness.

I respectfully ask you to support the Community/Family events that are listed in this issue. Each has become part of the growing family that will beat ALS. As a Chapter, we’re able to effectively provide services thanks to the individuals who dedicate their time, energies and resources to make these events happen.

Lastly, I would like to thank Team Gleason for all they do to keep hope alive.

Sincerely,

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Upcoming EVENTS 2014 ALSA-WI EVENTS

2014 COMMUNITY EVENTS

Evening of Hope March 8, Hyatt Regency-Milwaukee

Banding Together // March 15, Eclipse Center Terry Russell: terry.russell@cciwi.com / 262.784.5257

Janesville Walk to Defeat ALS® May 10, Lion’s Beach Park Chasin’ A Cure Tailgate July 11, Miller Park Platteville Walk to Defeat ALS® September 27, Mound View Park Appleton Walk to Defeat ALS® September 27, Appleton Memorial Park Milwaukee Walk/Run to Defeat ALS® October 12, Greenfield Park

Toast to Hope // April 5, Hal’s Harley-Davidson Carrie Schmidt: carrie.schmidt@halshd.com / 262.814.8684 Rockin’ For A Cure // April 12, Sheraton Madison Hotel Mike Annello: manello@mcw.edu / 414.704.0209 Koebel Open // May 31, Meadowbrook Country Club Rachel Torgerson: rachelt00@yahoo.com Waupaca ALS Benefit Ride // June 7, Waupaca Jenna Simons: alsbenefitride@gmail.com / 715.281.8182 Shoot ’N For a Reason // June 21, Berlin Conservation Club Meg Posorske: mposorsk@kcc.com / 920.236.9451 La Crosse Walk to Defeat ALS® // June, TBD Summer Freeze Out // July 18-20, Eble Ice Arena Kevin Keating: kkeatingsk8218@yahoo.com / 414.659.2237 Day Fore Hope // July 19, Riverside Golf Course Randy Krueger: adayforehope@yahoo.com / 608.754.7746 WAC “Chips In” Golf Outing // August 22, Ironwood Golf Couse Randy Foss: rfoss@thewac.com / 414.427.6500 Ice Cream Ride for ALS // August 24, Burlington Deb Heinzelmann: debheinzel@gmail.com / 262.210.2568 Father Dan ALS Walk // October TBD, Maximilian Kolbe Church Jenny Biadasz: jbiadasz1977@gmail.com / 715.824.3380 Boesch Bowling Tournament // October TBD, Grafton Pub & Bowl Jane Boesch: janeboesch@att.net / 262.377.7979 American Legion Community Days // Date TBD, ALS Walk, Onalaska Contact: 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 / 920.684.322

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WALK TO

DEFEAT ALS

®

SAVE THE DATES

A N D H E L P B U I L D C O M M U N I T Y S P I R I T. All Walk to Defeat ALS® events not only provide huge awareness and platforms for honoring families affected

by ALS, they’re also major fundraisers that help provide equipment and services for ALS patients within specific communities. The localized goodwill and neighborly compassion each event generates is immeasurable.

Janesville, Wisconsin Platteville, Wisconsin

T

T

May 10, 2014

T

September 27, 2014

Lions Beach Park T

Mound View Park

Appleton, Wisconsin T September 27, 2014 T Appleton Memorial Park Milwaukee, Wisconsin

T

October 12, 2014

T

Greenfield Park

T Milwaukee Will Be A Walk/Run Event T

Now’s the time to register your team at: walktodefeatals.org For answers to questions or more info, visit alsawi.org, or call us at 414.831.3993.

Don’t miss the 2014 Evening Of HOPE 2014 marks the 21st year of this signature annual event. (Coincidentally, that’s the same number of years its creator, Jeff Kaufman, lived with ALS.) To date, Evening of Hope has raised more than $3.4 million for ALS research. And while it’s a black tie affair, it’s anything but stuffy. From the captivating speakers and awesome dinner to the dancing and silent auction, it’s always an exuberant evening.

Get your tickets now at beatals.org For more information, just call The ALS Association-Wisconsin Chapter at 414.831.3993.

The online Evening of Hope pre-auction begins March 1, 2014. It’s your chance to get a sneak peek and head start on some great, one-of-a-kind acquisitions. Considering the cause, we assure you you’ll never suffer from buyer’s remorse on any of these graciously donated items!

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Toast Hope

Saturday, April 5th, 2014

to

12th Annual

To Benefit ALS Research

Save The Date

BOP ‘TIL YOU DROP! LET’S ALL PARTY LIKE IT’S 1950 — AGAIN! T Microbrew & Food Tastings T Live Music T Silent & Live Auctions T Raffle Prizes T Commemorative Tasting Mug T Photos On A Classic Harley & More T All Proceeds Benefit The ALS Association’s Wisconsin Chapter

TICKETS ON SALE JANUARY 2014 HAL’S HARLEY-DAVIDSON 1925 S. Moorland Rd. (in New Berlin) 262.860.2060 | halshd.com Visit The ALS Association’s Wisconsin Chapter at alsawi.org

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DON’T DON’T MISS MISS OUT. OUT. SAVE SAVE THE THE DATE. DATE. 3RD 3RD ANNUAL ANNUAL

CHASIN’ CHASIN’ A A CURE CURE TAILGATE TAILGATE PARTY PARTY Help Shut Out ALS at Miller Park Friday, July 11, 2014 TAILGATE @ 5:30 PM

GAMETIME @ 7:10 PM There’s certainly no shortage of tailgate functions at Miller Park, but none as worthwhile as this one: the 3rd Annual Chasin’ A Cure tailgate party.

This year’s event will be Friday, July 11th, and will again feature great food and drinks like Sobelman’s burgers and Jimmy Luv’s bloody marys. Plus another pre-game concert by local favorites Chasin’ Mason — followed by loge level seating to the Brewers vs. St. Louis Cardinals game.

Of course a baseball field is an especially fitting venue for raising awareness of Lou Gehrig’s Disease. It’s also a great place to rally around the cause and join together in the quest to find a cure. While having a heckuva good time, by the way.

Watch for more details and reserve your seat early.

This year promises to be our biggest tailgate yet.

Ticket package does NOT include parking. All game tickets will be picked up at the registration table at the Chasin’ A Cure tailgate on July 11th. Ticket price entitles you to one entry to the event.

Please call the ALS Office with any questions at 414.831.3993.

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Research UPDATES

Discovery Of Immune Cell’s Molecular Signature LIKELY TO SPEED THERAPY DEVELOPMENT For People Living With ALS In a study published in the scientific journal Nature Neuroscience and supported by The ALS Association, researchers have for the first time identified a unique molecular “signature” for a type of immune cell in the brain and spinal cord believed to contribute to ALS.

The researchers investigated ways to distinguish cells called microglia, which reside in the brain and spinal cord, from other immune cells that migrate in during the ALS disease process.

Under certain conditions, microglia are thought to accelerate ALS by contributing to “neuroinflammation,” an inflammatory process that contributes to the loss of motor neurons. Motor neurons are the major neuron type affected in ALS. The researchers found that microglia could be identified by their expression of a unique set of genes and that this expression depended on a growth factor called TGF-beta.

“This should provide a basis for both understanding microglia biology and for modulating microglia in the treatment of central nervous system diseases,” said Oleg Butovsky, Ph.D., who led the study, along with Howard Weiner, M.D. Dr. Butovsky is Instructor in Neurology at Harvard Medical School in Boston, Mass. Dr. Weiner is Professor of Neurology at Harvard.

“Microglia have emerged as potentially critical contributors to ALS,” said Lucie Bruijn, Ph.D., Chief Scientist for The Association, “and may be an important—and accessible—target for therapy to slow the progress of the disease. The more we can learn about their function, and how to precisely identify them, the faster we can translate that knowledge into new treatments.”

Dr. Butovsky is funded through a TREAT ALS™ Drug Discovery contract. The milestone-driven program enables the investigator to further develop a treatment approach and bring an important discovery closer to the clinic.

Editor’s Note: The Wisconsin Chapter’s Evening of Hope funded an earlier ALS therapy study led by Drs. Weiner and Butovsky in 2011.

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Corrected article from our previous issue as it should have appeared.

The ALS Association Awards $500,000 to the NEALS Consortium for Its TREAT ALS™ Clinical Trials Network WASHINGTON, D.C. (August 13, 2013) - The ALS Association is pleased to announce it has awarded $500,000 to the Northeast ALS Consortium (NEALS) to fund new initiatives and ongoing programs that will increase the quality and efficiency of clinical trials for amyotrophic lateral sclerosis (ALS). The grant will support the work of NEALS in its collaboration with The Association’s Translational Research Advancing Therapy (TREAT) ALS program, a diverse portfolio of ALS research to find treatments and a cure for ALS. ALS, which is also known as Lou Gehrig’s Disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis and death within two to five years of diagnosis. There is no cure and only one drug approved by the U.S. Food and Drug Administration (FDA) that modestly extends survival.

This is the sixth consecutive year of funding by The Association for NEALS, which is the largest consortium of ALS clinical researchers in the world. “We are very pleased to continue and extend support for ALS clinical trials research through the collaboration between NEALS and TREAT ALS,” said Lucie Bruijn, Ph.D., Chief Scientist for The Association.

New initiatives funded this year include: Exploring the feasibility of a centralized Institutional Review Board (cIRB) for NEALS clinical trials.

An IRB is responsible for protecting patient safety and autonomy during a clinical trial. Studies have shown that a centralized IRB can perform the same functions while greatly reducing the start-up time for a trial. NEALS will pursue the possibility of establishing a cIRB for its trials, in order to reduce delays in beginning trials for new drugs. They will also pursue efficiencies in contract development and trials site reporting, both important aspects of running efficient clinical trials.

Videotaping the annual Clinical Research Learning Institute (CRLI) in an effort to reach a broader patient audience. The CRLI is an intensive program dedicated to educating patients and caregivers on clinical research and therapy development while also empowering them to act as advocates for ALS research. Providing web-based access to the program will offer patients and caregivers unparalleled access to this high-quality and actionable information. »

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Continued

The ALS Association Awards $500,000 to the NEALS Consortium for Its TREAT ALS™ Clinical Trials Network »

Creation of a Global ALS Patient Identifier. Using technology from the National Institutes of Health, NEALS will create a unique ID for each ALS patient who enters a clinical trial. This will protect patient identity while enhancing research collaboration. Researchers will be able to share data and biofluids without compromising patient privacy.

Development of NeuroBANK,™ a platform for collaboration, research, education and best clinical practices development utilized by the ALS clinical and research community. NeuroBANK ™ is poised to become central repository for clinical research data in ALS, greatly expanding the ability of researchers to share data and speed research. Samples collected through this resource are available for researchers world-wide.

“The ALS-CRLI has now helped 60 Research Ambassadors to be more effective advocates for ALS Research, thereby empowering them to speed the development of better ALS treatments. The ALS-CRLI program itself keeps getting better and better, thanks in large part to the excellent feedback we get from each graduating class,” said Richard Bedlack, M.D., Ph.D., Duke University.

In addition to these new initiatives, The Association’s support will allow continuation of multiple ongoing projects, including clinical trials recruitment, training of young investigators, and improving the quality of clinical trials through training of both Principal Investigators and Site Investigators. Funding will also continue to support The ALS Association/NEALS Clinical Trial Expert Line, which offers a full-time staff member available to answer questions and help people navigate through the clinical research information. Help is available by telephone 877.458.0631 during regular business hours, Eastern Standard Time, or by email at alstrials@partners.org.

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Support Groups & MEETINGS

ALS Caregiver GROUP MEETING LOCATIONS THE FOLLOWING ARE THE MEETING LOCATIONS FOR OUR ALS CAREGIVER DINNER OUTINGS. The group meets the fourth Thursday of

Thursday, February 27th, 2014 La Fuente 9155 West Bluemound Road Milwaukee, WI 53226 414.771.9900

the month at 7pm (except 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 is a chance to share with others, give and receive support, and find out

Thursday, March 27th, 2014 Quaker Steak & Lube 4900 South Moorland Road New Berlin, WI 53151 262.754.9090

good information and tips in a very relaxed environment.

Note: Locations for meetings after March are TBD.

Please contact Robin Stanczyk at 262.402.8148 or robin@alsawi.org to RSVP for the outing or for more information.

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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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Dear Chapter Members, I hope the Holiday season was filled with some special times and special memories for all of you. This issue, I have replaced my regular column with a great article written by one of our Chapter members and member of our Board of Directors, Tom Kettler. Some of the best information and tips come from others who have personal experience with ALS. Thanks so much Tom, for sharing this information!

As we move into 2014, please remember that the Chapter’s Care Services staff is here to answer your questions, provide and connect you with resources and provide support in any way they can. Please don’t hesitate to contact one of your Care Services staff members at 262.784.5257.

Happy New Year to one and all.

Care Services Director The following article was written by Tom Kettler, a member of The ALS Association – Wisconsin Chapter’s Board of Directors. Tom was the primary caregiver for

A GUIDE TO HIRING A CAREGIVER

A diagnosis of ALS results in the progressive loss of function for the patient and an increasing challenge to the caregiver to keep ahead of each stage of the disease. While the care and comfort of the ALS patient remains the primary focus, the caregiver must remember to take care of his or her own needs. Burn out is very common to those assuming a caregiving role. The well being of the caregiver must be maintained in order to prevent physical and mental health problems. If the caregiver becomes incapacitated, the ALS patient also suffers.

As the ALS patient becomes more dependent, it is common for the patient and/or family to hire an outside caregiver to provide either respite care or total care for the patient. Following are some guidelines and suggestions to be used by the patient and family in the hiring of a caregiver or care giving service. This is not a full list of possibilities, but rather a suggested course for the patient and family to explore and the patient and family are advised to research and verify any and all suggestions.

Family and Friends The primary caregiver for most patients is a family member or members. Usually a spouse or significant other assumes the primary caregiver role taking on an ever increasing amount of responsibility for the physical well being of the patient. Many times siblings, children and friends step in to provide relief for the primary caregiver so that they may pursue a hobby, go shopping, take in a movie or just get away to provide recreation and to recharge.

his wife Susanne, who lived with ALS for five years until she passed in 2008. Tom and Susanne hired private caregivers to supplement the care provided by Tom and their children. Tom himself learned much from that experience and has generously shared his insights through presentations to the Milwaukee Area Support Group, to individual Chapter members and now by writing this article for The HopeLine. Tom is currently the Public Policy Chair for the Wisconsin Chapter as well as a member of the Care Services Committee. He is also a member of the Board of Representatives and sits on the Strategic Planning Committee for The ALS Association

As the disease advances, the patient may be reluctant to allow respite caregivers because of the loss of privacy related to dressing, bathing and toileting. This is very understandable and everyone can relate to the reluctance of anyone to give up their privacy in these most sensitive issues. However, the patient must understand that the primary caregiver requires time off in order to maintain his or her physical and mental capabilities. Allowing a well trained substitute to care for them is the best gift the patient can provide the primary caregiver.

[NOTE: The ALS Association’s Care Connection Program has some great tools to help organize family and friends who wish to offer their »

– National Office.

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Continued

» time to help in different ways.

Please see the Care Connection article in this issue. If you would like more information on the Care Connection Program, please contact Diane Fergot at 920.279.4449 or diane@alsawi.org ]

Non-Medical Caregiving Agencies There are many professional caregiving agencies that will interview the patient and family, as well as review medical requirements to determine the extent of cares needed.

If hired, they will provide a caregiver who may have a CNA (Certified Nursing Assistant) or PCW (Personal Care Worker) designation and be trained to provide the necessary level of care. The patient and family will work with the agency to determine how often the caregiver is needed, whether it is for a few hours every week, every day or around the clock.

It is suggested that several agencies be interviewed to determine their policies and procedures and to ascertain the quality and level of training of their employees, as well as the cost. Some agencies also provide an RN who works with the family to set up a “Plan of Care” and supervises the assigned caregivers within that plan. An important question is to inquire whether the same caregiver(s) will be assigned to the patient or if they will rotate.

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Since the patient and family are hiring an agency, the caregiver provided is treated as an employee of the agency therefore there are no withholding requirements or Worker’s Compensation insurance requirements.

[NOTE: The Chapter’s Care Services staff can provide recommendations of agencies who are experienced with ALS.] Covering the cost of hiring a caregiver may fall upon your personal medical insurance, a long term care insurance policy, Medicaid, a local government program, self pay or a combination. If the patient and family are unsure of their eligibility for coverage, it is advised that they contact their insurance representative or employer to inquire of the benefit available. Also, contacting the local county Aging and Disability Resource Center (ADRC) and speaking to a Benefits Specialist will help determine if there is coverage available or perhaps provide a referral to another resource. Personal care is many times termed “Custodial Care” by insurance and Medicare and therefore not a covered expense – but it is important to always investigate.

[NOTE: The Chapter’s Care Services staff can work with you to connect you with your county ADRC.] The benefits of using an agency are the ready availability of trained

caregivers, a backup caregiver in the event of sickness or vacation and the elimination of the need to hire individually and withhold taxes or provide Worker’s Compensation.

Independent Contractor Hiring a “freelance” care provider reduces the need to withhold state and federal taxes plus Social Security and Medicare taxes.

It also eliminates the need to obtain a W-4 and provide a W-2 to the caregiver but a 1099 must still be provided if the annual compensation exceeds a certain monetary level. The independent contractor status assumes the caregiver will be responsible for reporting and paying all of his or her own necessary taxes.

It also assumes the caregiver meets the stringent governmental requirements to qualify as an independent contractor.

Even if an independent contractor is hired, the patient/family should explore whether to obtain a workmen’s compensation insurance policy to cover liability in the event of a workplace injury by the contractor. One of the primary benefits of using an Independent Contractor is that there is less responsibility on the patient/family end for reporting, while maintaining the ability to control who is hired and under what conditions. Also, it can be generally less expensive than hiring an agency.

Employee The surest way to maintain maximum control of caregiver hiring is to treat the caregiver as an employee. As the employer, the patient/family hires an individual based on criteria established in concert with federal and state guidelines and agrees to withhold federal, state, Social Security and Medicare taxes. A W-4 will be required from the caregiver and a W-2 will need to be provided by the employer. Quarterly reporting will be required and unemployment compensation will need to be paid along with providing Worker’s Compensation Insurance.

Record keeping and reporting is required, which may be handled by the patient/family or a paid service. Generally, this status provides more loyalty to the patient/family, but it also is more labor intensive. The benefit is greater control of who is hired and is generally slightly less expensive than hiring an agency.

Optionally, while an in-home caregiver can be treated as an employee as described above, there is further definition of this status as not being considered an employee in “Domestic Servants and Home Care Providers” (WKC-13089-P) from: Wisconsin Worker’s Compensation Division Bureau of Insurance Programs P.O. Box 7901 Madison, WI 53707-7901 *It is strongly recommended that the patient/family consult their legal and or tax professional to determine the best option to follow.*

General Information In hiring a Certified Nursing Assistant, Home Health Aid or Personal Care Attendant, great care should be taken to obtain referrals and references. Local community health services can be a resource for obtaining referrals to lists of local agencies and individual caregivers. The responsibility of vetting them will still remain with the patient/family.

Practical hiring suggestions for interviewing, selecting and contracting with either an agency or an individual can be found by going online and typing in “How to hire an at home caregiver.” Several sites will become available to obtain general information and suggestions on the hiring process.

Wisconsin employment law can be found at “Wisconsin Department of Workforce Development” and “Wisconsin Worker’s Compensation Division.” Federal withholding forms and instructional pamphlets can be found at www.irs.gov and Wisconsin withholding forms and pamphlets can be found at www.dor.state.wi.us.

A final note from your Care Services Team Starting the process of looking into caregiving assistance can be daunting. The Wisconsin Chapter’s Care Services staff is available to talk over the phone, or sit down in person, to discuss your needs, your options and to provide resources to start the process. We are here to help. Please contact us at 262.784.5257.

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Caregiver DINNER

FAREWELL, CAROLINE The Chapter’s Holiday Gathering on December 7 was bittersweet as many of us said goodbye to Care Services Coordinator Caroline Schweitzer. Caroline is following her heart to Houston, Texas, where she will join the team at Dan’s House of Hope, an organization she co-founded in memory of a dear friend who lost his life to cancer. We know Caroline will excel in her new role and wish her great success.

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CHAPTER EQUIPMENT LOAN UPDATE!

W

ith the Chapter’s growth throughout Wisconsin, we are continually working on ways to ensure that all of our programs are readily available to everyone. One of the most highly utilized Chapter programs is the Equipment Loan Program. The Chapter has a large inventory of a variety of durable medical equipment from shower stools to electric wheelchairs that are available for loan at no cost to individuals who live in Wisconsin, are diagnosed with ALS and are registered with the Chapter.

We have had wonderful partnerships with organizations around the state who have donated space, along with their staff time and expertise to make sure this program is accessible to our Chapter members.

We want to recognize these organizations who have been so invaluable to the growth and services of The ALS Association – Wisconsin Chapter’s Equipment Loan Program for many years. They have been and will continue to be wonderful partners in our service to Chapter members and families.

Barrett Moving and Storage Company Knueppel Healthcare, Inc. Reliant Rehab – Appleton, Eau Claire and Onalaska offices

We have recently expanded our Equipment Loan Program to include an additional partner – NuMotion Medical Equipment Company based out of Oak Creek, Wisconsin. NuMotion has offered to provide significant space, which has allowed the Chapter to combine the Milwaukee area’s power and non-power equipment (previously generously stored at Barrett Moving and Storage Company in Waukesha and Knueppel Healthcare in West Allis) in its Oak Creek and Madison sites. NuMotion also will be able to pick up and deliver the loan equipment throughout the state -- making our program more available to our Chapter members. The transfer of the equipment was completed in late November from Barrett and Knueppel and the program is up and running in the new site at NuMotion in Oak Creek.

The Wisconsin Chapter offers sincere thanks to Jim Castino and the staff of Barrett Moving and Storage Company for over ten years of unbelievable service and support, along with the donation of a large storage space. Everyone at Barrett was ready to help in any way possible and we know we will continue to be a partner in the years to come.

The Chapter also cannot say thank you enough to Cindy Ciardo and staff of Knueppel Healthcare, Inc., who worked alongside Chapter staff to ensure that Chapter members received the best care and the most appropriate power equipment possible from the loan equipment stored at Barrett. From technicians, to billing, to front desk to management, Knueppel’s professionalism and commitment to care made a true difference. We look forward to our continued partnership.

The ALS Association – Wisconsin Chapter and its programs depend on wonderful partnerships such as these and we appreciate and sincerely thank everyone in these organizations for sharing their time and expertise and resources.

If you have questions on the Chapter’s Equipment Loan Program or are looking or are in need of a piece of equipment, please contact Robin Stanczyk, Care Services Coordinator at 262.402.8148 or robin@alsawi.org.

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10

TH

ALS Care

&

Save T he Dat e!

Research Symposium S ATU R D AY , M AY 1 7 , 2 0 1 4

MARK YOUR CALENDARS for Saturday, May 17, 2014 to attend The ALS Association-Wisconsin Chapter’s 10th Annual ALS Care and Research Symposium to be held at the Sheraton MilwaukeeBrookfield Hotel. This is a half-day educational event that is full of information and resources for individuals with ALS, their families, as well as health care professionals.

This year, our special keynote speaker will be Michael Benatar, MD, PhD, Associate Professor of Neurology and Chief of the Neuromuscular Division at the University of Miami. He leads the ALS Research Collaboration or ARC at the University of Miami, which is a team that is dedicated to research in the field of ALS, with a particular focus on familial ALS. ARC collaborates with many other scientists across the country and in Europe on a wide variety of studies. Dr. Benatar will be presenting on the research he is currently involved in, as well as research around the United States and Europe.

We are very pleased to have Dr. Benatar joining us this year!

Watch your mail and email for more information!

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Care Services CORNER CHAPTER WELCOMES NEW CARE SERVICES TEAM MEMBER

MARY DEFRAIN-JONES

Mary DeFrain-Jones has joined the Care Services Team with The ALS Association - Wisconsin Chapter as a Care Services Coordinator based in our main office in Wauwatosa. She will also be a member of the Froedtert ALS Clinic Team as a Social Worker.

Mary obtained her Bachelor’s Degree in Social Work from the University of Wisconsin- Milwaukee. She was also honored with the Caregiver of the Year Award from the Milwaukee County Board of Supervisors. She started her Social Work career working with developmentally disabled adults. She then went on to join an area home hospice organization as the Bereavement Coordinator.

Mary has a long history of providing education and support to a wide variety of individuals with many different challenges and concerns. In her free time she enjoys reading suspense novels, playing cards and any board game. Mary and her husband Shayne travel and spend a lot of time entertaining friends and family.

Mary is eager to jump into her new role with The ALS Association and will work diligently, with compassion and humor, to become a valuable resource to you and your family.

Welcome Mary!

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Thrivent – Vintage Baseball & Touch of Glass Thank you to Thrivent Financial for Lutherans™ for putting on two incredible events that raised $12,500 for our Care Services Department.

Fox Valley Holiday Gathering Our Fox Valley families and friends had some pre-holiday fun at their annual Christmas celebration.

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Holiday PARTY SHERATON Families and friends came from all over Wisconsin to celebrate the holiday season together. A meal was shared, laughter was exchanged and many thanks were given.

No kid left empty handed, either. Thank you to all of those who came out. We hope your New Year is off to a great start.

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& Raw

Beautiful

Trickett Wendler’s Story Photos by Ellen Cook | ellencook.com

Transformations

W

e have a family tradition at every dinner, each person shares their personal high and low for that day. I remember my youngest’s first attempt was such adorable nonsense, “My highs are my highs and that’s my lows. All done, mommy.” But last month that same little girl, now six, said innocently and matter of factly, “My low is that mommy has ALS and will be in a wheelchair for the rest of her life and die.” We were in shock.

We try so hard to keep our focus on the hope...we were at a loss for words. After a few silent tears I replied, “Now wait a minute, yes I have ALS, but what’s important is that we focus on making each day matter and that mommy is fighting.”

Diagnosed June 20, 2013, I was literally taking Zumba classes in March and then in a wheelchair by July. In May, I had my first undeniable symptom that something was wrong. On a business trip I felt too tired to stand, started limping and was in pain for no apparent reason. I was a healthy 39 year-old, celebrating 10 years of marriage, and attempting to balance a successful career while being a good mom to our three children. After two months of tests and doctor visits, I was told they had ruled everything else out, and I had ALS. I would become a younger face with a younger family than is typical with ALS; a reminder that ALS is nondiscriminatory. This nightmare disease considers everyone fair game.

Now I am in a .0001% club. Sounds like winning the lottery except it’s not. This barely visible club is made of the estimated 25,000 people in the US who share my disease. And double whammy, I have a rare familial ALS...the notorious fast progressive SOD1 gene. What does that mean? I couldn’t help putting words to the letters...SOD1...Sick Or Dying 1...Slow Overwhelming Death of 1…but the name doesn’t work. It’s not just one. ALS, to me, feels like my body is taking my mind hostage. But Familial ALS is like a family curse; my children, my brother, my cousins, my aunts...they are all on the kidnappers’ list. »

But I have grown from this in surprising ways...

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A FRIEND OF MINE created a

public Facebook page dedicated to my fight against ALS and as an outlet for awareness. Although hesitant to use social media, it opened a door where I started sharing a less censored version of myself that I hoped would shed light on ALS.

August 11

It’s hard to write about where I am now with this disease and its progression – but I know people are concerned and care, so here is a physical update on me. Fatigue is my biggest issue. The muscles that are still working are overused and everyday necessities, like showering, cause me to feel like I need a nap. As the nerves that tell my muscles to move die off, my muscles react with twitching.

It’s mostly in my left leg and arm, but there is starting to be some twitching in my torso now.

I have some pain...feels like a pattern: pain, twitching and then weakness. I feel unsteady when I walk because muscles don’t react like they did before...it makes me look a little drunk all the time without even one margarita.

I take one medication 2 times a day required to be taken 2-3 hours after eating and waiting another hour after. That is a huge pain in the rear, especially since losing weight is a big “no-no.”

Bending down and stairs are now my enemy #1 these days. And I named my lazy left leg, ‘Jaba the Leg’, so I can piss and moan about it in third person. We will be on the hunt for any electric chair soon. Timmy is starting to buff up pushing me all over. Love that man! But I would prefer a little more independence and give him a rest.

I have hopes for a clinical study and am working on getting to the University of Michigan’s ALS Clinic as they are doing a phase II trial with stem cells. I should know more on that Monday. I also went to Massachusetts General Hospital, where I have seen amazing doctors and gotten patient care that felt like a family.

So many people have helped me get to the right people so far.

It’s really the love and support that helps me get up each day, knowing that today is the strongest I will ever be again, and start the day with “how can I make this day count?”

Since the diagnosis, I feel a heightened sense of “awake,” especially with the children.

Special moments occur in a sweet slow motion and I watch them happen in front of me, as if through the eyes of my loved ones’ future memories…and I choose to make those moments more.

October 25

I made today matter. Thanks to my selfless best friend (who’s not afraid tackle a 200 pound wheelchair and a 6 ft. ramp), I made it to the fall class parties for my two littlest. The Pewaukee teachers were so wonderful to accommodate me. God bless those sweet kids and their questions. I never feel bad answering their innocent inquiries about “why am I in a chair?” For some reason, it just doesn’t feel as scary when I tell them. These days I am more of a cheering crowd for the kids than ‘classroom helper,’ but I loved every minute.

This time has fueled a faith in the goodness of others that I could never have imagined. Family, friends, colleagues and friends

of friends have made unexpected, incredibly loving gestures of all kinds. This unsolicited love has shown me how guarded and pride-filled I’ve lived, forcing me to try to learn to graciously receive. I love the feeling of helping someone else, and I

So this is a physical update on my condition: I have continued weakening, but praying I plateau and can keep up some walking for the next month or two or four!

I feel like I have about 20% of my left leg and 40% of my left arm muscles remaining. I can get to

sleeper. I know now my muscles work while I sleep to keep my hips/shoulders somewhat aligned and handle the weight of moving blankets. My fluffy comforter now feels like a couple wet blankets holding me down, and it’s hard to pull one way or another. I am

need to allow others that same joy. I expect this will be my most challenging continued learning, as I will require more assistance every day to keep my life fulfilling.

standing position with help from my arms, but bending down is a lost cause. I can still walk short distances - once up on my feet, but it’s very tiring. My right side and torso have weakened slower, thankfully. I feel like maybe I have 60% of those left. I think my breathing and throat/tongue have minimal loss so far (thank God).

Sleeping is one of my biggest problems...I was already a restless

a blanket cuddler, so this tends to frustrate me a bit. I blame my sleep for most of the muscle pain I experience during the day.

October 27

I know lots of people are wondering what the hard questions for me to answer often.

“Where am I with progression” and “What does ALS feel like?”

Many people ask me what does ALS or losing use of a limb feel like? Feels sloppy...like my leg got lazy and won’t move when I ask and decided to get skinny. Like it took a nap and won’t wake up. It’s happening a little every day...so I »

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“ » notice most when I can’t do something I used to do, like being able to hold the blow dryer above my head or bend down to put boots on. I can feel everything, (especially the great little foot massages my kiddos give me) and my spirit stays strong most days. Sometimes while I am sitting on the couch resting, I get a moment that I forget I’m sick and feel healthy again. I love those moments.

Tim and I fly to Boston to start a trial drug on Tuesday. It’s in phase II and will soon be tested on ability to slow progression. I also take a drug called Rilutek, which can slow progression about 10%. There’s no way of

Often overwhelmed by the outpouring, my heart seems to have grown 10 sizes too big for my chest, so sometimes I just cry to make room...

”

We owe so many thanks...please know, I have literally gotten out of bed on my roughest days to try to honor the thoughtful gestures we have received. You all inspire me and I can’t be happy or inspirational feeling sorry for myself in bed. Thank you.

Although changing, I don’t feel like I’m a different person. I choose to give the benefit of the doubt more often. It’s a lesson that would have been better learned earlier and doing so leaves a happier version of myself behind. It’s been a blessing to be too tired to overthink it. I’ve realized how much of my past moments I missed by dwelling in the details, like a photographer who spent time arranging all the leaves on the tree to get the best photo – only to let the natural light pass by.

November 16

Grateful Day #15: Thankful for letting go...like the fact that I am late posting this, and I have several big chunks of drywall missing from driving my scooter too fast while chasing kids, and well...accepting that it’s ok to not worry about the house looking tidy for visitors.

Wasn’t sure if that was going to come easy to me or not, but you just don’t know what you can do until you have to...and I am grateful for letting go of the little stuff. knowing if it’s helping, but I like to think it is. It amazes me that I am on the same drug my Dad took in ‘97...so little progress on treatment. I read a quote that gives me hope and I believe: “ALS isn’t incurable, it’s just underfunded,” Dr. Appel.

My mind seems the biggest battle, I have moments...where sadness owns me. But I focus on making each day matter and the love & support we have.

The kids are good. Overall, they don’t seem the slightest bit embarrassed of my chair and proudly jump to give me a shoulder when I walk to keep me steady. I was given an amazing family to fight this with. Of course they worry though and are starting to ask some of the hard questions. We are honest but always focus on how I am fighting.

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There is a part of my spirit that is exposed, the kindest version of myself on my sleeve...filled with love so deeply I overflow. I am now the person who falls in love with her husband and kids again every day. It’s not always comfortable to feel so much, but it’s rewarding, so I keep the floodgate open most days. And when the emotions become too much, I visualize the cartoon Grinch’s heart growing 3 sizes bigger and it makes me smile.

November 30

While conserving energy for a benefit in our honor, it hit me that many friends will be wondering where I am with progression and it might be good to let you all know ahead of time.

I have more good days than bad. My left leg can still hold my weight, but movement is limited to a couple inches at a time and slowly to avoid falls. I usually drag my left lazy Jaba leg or sometimes kick it where I want it with the right Jedi leg (yes, I nicknamed them). I use my walker to stabilize, but I can still do short distances. Luckily, I have enough strength left in my arms to balance myself and give big hugs. Mostly, I use my electric chair to get around so I don’t tire myself out so much. My torso has started weakening and keeps me from sitting up in my chair for long periods. Tim raised my bucket seat up and reclined it back to help alleviate pressure on »

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(must be the Games of Thrones books he’s reading, LOL).

» my torso...now I feel a little like I am riding dirty and poppin’ my chassis. Today I will probably be running on adrenaline and hope I don’t need to take a flat rest in the car...we will see...if I need one, you can come hang with me in the car.

I get cramping now and there is pain in the overworked muscles, but it’s concentrated in the morning and my meds help – so it’s tolerable. My vocals seem good, I still speak well...well, not always intelligently but audibly.

My swallowing is starting to slow... but I just take things a little slower and chew extra well. So far, so good – no choking.

I am almost done with week 4 of the clinical trial drugs that I take 6 per day, along with a colorful selection of other pills.

Still on the fence whether I have the placebo or actual trial drug...I keep tasting the powder to see if I can tell. I head back to Boston for a follow-up in January, where I hope to learn if the trial drug has any results from the previous participants. Crossing fingers.

Kids are good...good helpers and in groups at school to talk with counselors. They now ask the hard questions and we cry together sometimes, but they often remind me to enjoy every day... they are so smart. Tim is the family anchor and keeps the whole thing together. Funny though...I must be working him pretty hard cause he is getting a six pack while I turn to Pillsbury dough girl. Lately he says I am his Sun, Moon and Stars

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I get help every day from family and friends; making meals for us, endless laundry, sometimes getting me dressed or into the shower – good thing I was never shy. Often overwhelmed by the outpouring, my heart seems to have grown 10 sizes too big for my chest, so sometimes I just cry to make room, but it’s a really good cry. All the love and support keep me going... truly – physically and mentally.

Keep us in prayers and bless all of your beautiful souls rooting for us.

I had always supported the ALS cause with time and donations.

But since the diagnosis, I’ve felt the rush of asking myself how can I help more? We asked family and friends to support the local walk, which was a quick win and showed us how loved we were – even by those we haven’t met. I still struggle with how to best give back and wonder what would be best served by my remaining energy. I want to aim for the harder task, to inspire others in a way that creates a place in their heart for the ALS cause.

December 11

UW-Whitewater DECA Association ALS Presentation. Back at UWWhitewater. Today I spoke with the student members of the Collegiate DECA Campus Chapter.

This national organization chose ALS Awareness & Fundraising as their community focus this year and asked me to come share my story. I met a group of young student leaders who asked great questions and showed passion for the cause. *Bonus*...they were also pretty good at steering me in random classroom chairs. When your electric chair gets a short, you need to improvise...see photos (online) of hallway surfing and

Tim fixing my ride. UWW DECA Association: Thank you for asking me to come and for choosing this worthy cause to support.

B

y the time this is released, I don’t know where I will be with progression. And I can only pray that I will be inspiring awareness and research funding; a way to a cure for all of us affected and the 5,000 more that will be diagnosed this year. Because not only will I leave behind a brokenhearted family when it’s my time to go, I also leave behind the possibility that this could happen to my family again – that my beautiful children could one day fight this fight while my loving husband relives a nightmare that no parent should experience.

This is, in the words of my best friend, my “raw and beautiful transformation.” There is more pain, but I can also feel more of the love now. I can’t give the strong, gripping hugs of my former days but instead they are light hugs that leave a real piece of me behind. I hate ALS but I love that I’ve allowed my slightly shadowed self to take the lampshade off and soak in the light.

To view this story online, visit Facebook.com/ALSAWisconsin.

To follow Trickett Wendler: Fewell to Fight ALS on Facebook go to: Facebook.com/TeamTrickettWendler

Jim Eutizzi receives the Wisconsin’s own Jim Eutizzi has been named the 2013 recipient of The National ALS Association’s Lawrence A. Rand Prize. It’s our cause’s most prestigious honor, awarded to individuals who do the most to raise ALS awareness in the community and inspire others through exceptional service. Jim knows the ravages of the disease firsthand, having been diagnosed with ALS in 2007. Since then, he has dedicated himself to spreading the word as an educator and motivator. He has spoken at numerous schools and conferences, and has appeared on several TV news programs and radio shows. All with one goal in mind: to generate compassion and support for anyone affected by ALS. »

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He doesn’t “live his life

this way for recognition.

HE DOES IT BECAUSE IT’S WHO HE IS.”

» “Rather than dwell on the limitations his own condition imposes, Jim uses his energy and enthusiasm to raise awareness and improve the quality of life of other sufferers,” said Melanie RoachBekos, Executive Director of The ALS Association-Wisconsin Chapter and the one who nominated Jim for the award.

“He is absolutely the perfect poster person for ALS.” Steve Gleason, the former New Orleans Saints player who founded the immensely influential Team Gleason initiative after his 2011 ALS diagnosis, agrees. “Jim is passionate about life and empowers other to make

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a difference not only in the ALS community, but the world,” said Steve. “He doesn’t live his life this way for recognition. He does it because it’s who he is.”

A happily married father of four, Jim was a successful pharmaceutical salesman before being diagnosed at age 44. More than three years ago, he began a blog chronicling his journey with the disease.

His warm, optimistic and oftentimes humorous reflections have served to inspire and comfort readers.

In addition to developing a strong kinship with Steve Gleason, Jim was also

instrumental in creating the Chasin’ A Cure tailgate event.

Developed in partnership with the Milwaukee Brewers, it has become one of The Wisconsin ALS Chapter’s most high-profile awareness/ fundraising events. (Info on our upcoming 3rd Annual Chasin’ A Cure outing is on Page 11 of this issue.)

“Serving on the ALS Leadership Board, Jim lends a personal perspective that broadens the board’s entire vision,” said Melanie. “He’s an amazingly genuine, humble, kind, funny and grateful human being who refuses to let the disease win.

It’s an honor to work with »

TOP: Jim dressed to impress at last year’s Evening of Hope.

BOTTOM LEFT: Jim prepared to share his story to local high school students.

BOTTOM RIGHT: Jim next to his son, Dan, (left) after inspiring another set of students.

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“

He’s an amazingly genuine, humble, kind, funny and grateful human being WHO REFUSES to let the disease win.

”

» him professionally, but a better gift to have him as a dear and treasured friend.”

Obviously, no one deserves ALS. But if anyone deserves to be recognized for fighting it, it’s Jim Eutizzi. His persevering spirit inspires us all.

By the time this issue of HopeLine is printed, Jim will already have traveled to San Diego to receive his award. Congratulations Jim!

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In Our COMMUNITY

O

Written by: Darlene Stocki after she was diagnosed with ALS on July 7, 2006

Love Loveputs putsthe themusic musicin inlaughter, laughter, The Thesunshine sunshinein inskies, skies, The Thegladness gladnessin ingiving, giving, The starlight in your eyes.

The starlight in your eyes.

Love Loveputs putsthe thefun funin intogether, together, The Thesad sadin inapart, apart, The Thehope hopein intomorrow, tomorrow, The joy in aaheart.

The joy in heart.

Thank Thankyou youfor forbeing beingthe thelove love In Inmy mylife life— —and andthe thejoy joy In Inmy myheart. heart.

r

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THANK YOU, BOESCH FAMILY 2013 BOWLING TOURNAMENT The Boesch Family recently stepped into some unfamiliar territory — a bowling alley. For more than a decade, their softball tournament has raised money for our Chapter in loving memory of Mike Boesch, husband to Jane and father to Todd, Kevin and Kristin. Their 9 Pin Bowling Tournament was a huge hit and an event that everyone should look forward to next fall. For more info, visit mikeboeschmemorial.wordpress.com.

SPECIAL THANKS TO: Bob & Robin VanDinter, Joe & Vicki Kelll, Kalies Family, Ozaukee Ace Hardware, George Meikrantz, LaBudde Group, Mary Sciascia, Rich Erickson, Richard & Janet Benney, Ellen Weitzel, Eric Perez, Shully’s, Landmark Health Facilities, Thrivent Financial, Mark Tucker, Blue Rhino, Mel’s Pig Roast, Ram Tool, Inc., John Eckhart, Krall Family, Pfannerstill Family, Lampasona Family, Tim Fullington, Renee Reiner, Grace Uselding, Barb Johnson, Gary Schenk, Bridge Inn, Bolwerk Family, Rosengren Family, Lesch Family, Delores Lueders, Ozaukee Co Hospitality, 5 Corners GMC, Mueller Funeral Homes, Great Lakes Auction, Allen & Cheri Buchholz, D’Amorie Family, Willie and Mary Weyker, Jim & Ruth Berg, Linda Hanson, Bob & Eunice Keske, Joy Friede, Messina, Inc., Rich & JoAnn Janke, Antonette Kruegger, Linda Schmalz, Dr. Becker, Frank Oetlinger, Grafton Pub & Bowl, The Bridge, and Mark & Nancy Koehler.

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Contributions & MEMORIALS MEMORIALS Amin Aur Heidi Gaylord Paul Gaylord Doris Barbian James Barbian Roger Beers James Johnson Bill Ziemer Gail Ziemer Liz Ziemer Lori Biersack Daniel Biersack Larry Biersack David Blad Douglas Bolander Ronald Bruner Daryn Doberstein Thomas Ehrhardt Dianne Fennig Joel Flaschner Michael Guenther Christopher Kelley Edward Brust Rita Brust Jonathon Creydt Ronald Altenburg David Ewert Bonnie Jaeger Lenora Jaeger Donald Neubauer Herman Zastrow UW Health University of Wisconsin Medical Foundation Clair Culver Mary Bartzen Tom Bartzen Fred Boness Kathleen B. Culver Lorna Culver Peder Culver Scott Culver Thomas Doucette Julie Flatley Cathleen Fox James Freese Robert Gagliano Diane Kraczkowski Robert Krenzke George Lawrence Leatrice Marshak Jerry Metz Penny Metzke Jacqueline Meves Jane Miller Douglas Pom Barbara Serowski Debra Sutrick Theodore Torcivia

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Robert Trinkl Patricia Wendlandt Sherry Williams Jackie DaWalt Kelly Beauchaine Shirley Demske John Demske Jerome Dieterich June Demmon Elaine Dieterich Pamela Schall Karen Duffy Roger Dodds Karen Grace Bruce Hake Paul Sawicki Synergy Homecare Ron Spitz Phyllis Taylor Charles Ego Gerri Allen Linda Bardele Wayne Bardele Aldo Ceccarelli Kathryn Charles Robert Geniusz William Hughes Thomas Ibach Mary Jodeit Marla Kapperud Travis Keshemberg Thomas Kettler John Krenitsky Loretta Krenitsky Lake Oswego Tennis Robert Magill Robert Mau Christine Moore Joy Nolte Elaine Pagedas Jane Rautenberg Kurt Rautenberg Joseph Reszka Sandra Reszka Sabine Scheiffarth Jessica Schultz Schunk Graphite Inc Lisa Speidel Peter Speidel Dennis Stappas Robert Bosch Tool Corporation William Warwick Nate Westphal Harry Youtsos John Yunker Sandra Yunker Doris Zompolas Schunk Graphite Inc. George Ferguson

Rose Marie Ferguson John Grimmer Steven Chubowski Ralph Haase Jerome Bores Diane Haase Cheryl Hartwell Ericka Hakanson Christine Jordan Ruth Henerson Barbara Martin Christine Vlamis-Skogen Tammie Warzecha Kurt Weigelt Dennis Hickethier Normandie Byrne Linda Darnstadt Barbara Ludwig Cora Musial North Shore Bank Paul Novak Susan Reidenbach Ruth Schenning Frank Wyatt Richard Holyoke Ellen Holyoke Edwin Karn Lois Karn Roger Kraatz Lorraine Kraatz Henry Kuehn Carol Scott Joan Kuglitsch Marion Kuglitsch Mary Llanas Frank Kuglitsch Mary Llanas Mary Ellen Lewis Lisa Armaganian Thomas Doucette Kathleen Gross Monica Hilston James Hurley Thomas Kettler Gwenyth Niewoehner Robert Olson Betty Wiegand Richard Lodl Gregory Lodl Sally Loendorf Thomas Hasko Susan Marmurowicz Delores Gerger Gary Kitterman Ann Marmurowicz Harry Marmurowicz Caryl St. Claire Wayne Martin Elaine L. Martin Susan Schafer

Rose Scranton Alden Smith Marvin Miller Carol Anderson Donald Nelson David Nelson Jack Norman Donna Norman Richard Ogburn Daniel Galligan Lois Papendirck Julie Daggett Margorie Meuer Merle Parker Nancy Parker James Peterson Cheryl Kehrmeyer Mark Redner Cheryl Martin Rick Martin Paul Schmitter Magda DimmendaalSchmitter John Grafenauer Robert Kapsy Landmark Services Cooperative Charles Osborn Kelley Platt Mary Smith Christel Schott Marcus Perry James Schuster Kay Magowan Alan Schwister Linda Besting Christine Hunt Daniel Sherman Richard Abdoo Jeanne Allen Kathleen Balistreri Michael Balistreri Michael Benish Gary Bongiorno William Breitlow Daniel Buehrle Doug Calvert Forrest Ceel Kathy Chartier Marlene Chumbley CIT Consulting Annette Danforth Gail Deveau Laurel Dizadniski Dawn Driscoll Jordana Engberg Steve Faust Jerome Goskowski Rhonda Graziano Ellen Gross

Tom Guetzke Walter Hembel IBEW Local 2150 J.P. Anthony Inc Jim Kinzel Joseph Koehler Dawn Koenings Joseph Kowalkowski Jim Kunzman M & S Landscape Creations Donald Maasz Sharon Maierle Sharon Maierle Johnny Moscoso Auril Murphy Chuck Ohaviani Frederick Piefer-Wachtel Maria Redmond Neil Reseburg Joanne Ricca Lillian Roberts Larry Rolfson Randy Sawicki Craig Sengbusch Joan Shafer Chris Sherman Joan Sherman Michael Sikora Dale Sloan The Previant Law Firm Cathy Tikkanen Tony Tiliditzke Chuck Truse Nancy Wagner Ray Wagner Ed White James Wieting Rick Witz Steve Zach Thomas Zell Robert Snyder Nancy Snyder James Sobrofski Richard Janke Billie Sowaske Tammy Blexrude Carol Brusaw Debra Bersaw Carol Soyk Bill Soyk Jan Soyk Bill Tamminga Marilyn Martin Susan Tamminga Wilfred Tamminga Lorraine Tamminga Ronald Wardinski Diane Poseilenzny William Weihmeir

Bruce Creen Jane Creen Mary Weihmeier Cheryl Weitala Stephanie Henn Jan Williamson Russell Grady Kimberly McCauley John Rogan Mary Thielen Rodney Wozincki Janne Dietz Karen Grishaber Dr. Peter Wilson, Dr. Tom Casey & Staff Henry Zelinski Carol Zelinski Delbert Zunk Martin Lukes LIVING TRIBUTES Wendell Adams William Donovan Douglas Anschuetz Sylvia Meltzer Barbara Bauer Ed Biederman Lisa Rhiel Richard Rhiel Scott Smeaton Bob Beidel Barb Schultz Nancy Brower Joan Brower Phil Brower Robert Ciesielczyk James Farley Lois Farley Robert Kabat Arlene Linssen Bev Moeller Rich Moeller Diann Ciesielczyk Janette Ossman Stephen Cushman Wasthi Cushman Jim Eutizzi Cheryl Lange Sandra Fredericks Dawn Fox Kristin Walcott Kelly Giese Edith Giese Teresa Hanus Mark Kusek Amanda Teagardner Melissa Trouton Christopher Knutson Danny Long James Martin

Kathy Lowry Ron Spitz Kip Neilsen Johanna Halffman Sheila Salsman Thomas Tinney Jessica Weber Chad Gruenstern Art Weber Sharon Sprangers DONATIONS Alliant Energy ALS Support Group of Northwest WI Brewers Community Foundation Lori Borchert Charles Campana Terry Dietrich Kelli Effinger Angeline Fasolo James Furrie Jo A. Futrell Karen Gore Amy Gores Shaun Harrison Hayward High School Kathleen Heinzelman Ross Henning Richard Hext Susan Hovis Herbert Karls Tracy Kuper Cheryl Lange Mary Alice Larson Gregory Lodl Lumina Foundation Kelley McKenna Elaine Meier Geneen Miresse Daniel Murphy John Murphy Daniel Necci Sarah Ostermeier Our Redeemer Lutheran School Salli Peterson Becky Pogacar John Prokop Deborah Ross Gail Safranski Perry Sarver Laura Sims-Bundy Jon Skavlem Jane Snorek Annie Somermeyer Connie Soppa Kiefer Strautman Richard Streff

Denise Tadych Jean Waeffler Mark Werner BRIAN TRINASTIC MEMORIAL GRANT Amundson Partners Jane Arduser Michael Axelsen Jessica Banike Bay Graphics, Inc Samuel Bentzen Terry Beron Barbara Boerner Robin Bloczynski Joseph Bradstreet Kristin Bradstreet Leslie Bubolz Karen Buelow Mary Kay Brockman Timothy Byrne Cordes Cooper Margaret Cowen Barry Dahlgren Christine Dart-Fashun Sandra Davis Sara DeMarce Laurie Derus April Dethloff Carol DeWitt Mark Dickinson Michael Dix Randy Domres Nicole Donegan Georgine Dluzak Paul Easton Wayne Ebert Daniel Ferries Charles Gallagher Janet Gauger GFWC-WI Woman’s Club Of West Allis Christine Grilli Lorraine Grobschmidt Richard Grobschmidt Jerry Hackbarth Judith Hansen Lorraine Hanson Donald Hanson Catherine Hafemeister Barbara Heinrich Ronald Heinrich Ed Heinzelman Deb Heinzelman Kenneth Hemker Carolyn Herman Jennifer Jo Herman Sharon Hipp Rodney Holler Mike Jacobson

John Johnson Shane Kaatz Donna Kadlec Keith Kajfosz Mary P. Kalz Cheryl Kehrmeyer Dennis Kessenich Susanne Kettler Thomas Kettler Joan Kirkhuff Susan Kirsch Ervin Koch Kenneth Kochan John Koller Cris Kramschuster Clifford Lacrosse Gwen Lafond Cheryl Langenhorst R. Lazarz Paula Lee Ann Leestma Arnold Leestma Benjamin Leonard Larry Leranth Linda Sue Leranth Sandra Lichtenberg Philip Louis Lovejoy Realty Inc. Karl Marquardt Randall Martin Janice Mc Dermott Archie & Viola Meinerz Family Foundation Sharon Moore Robert Morgan Helen Mueller Robin Munger Luann Namowicz Sandra Nelson Angela Newman Patrick Neyhart Thomas Neyhart Julianne Ogara Darwin Oldenburg Ronald Parker Doug Perdue Debra Petersen James and Leigh Peterson Family Foundation James Peterson Diana Petre James Pierret Dale Piper Sharon Plucinski Jacqueline Podewils Susan Pohlhammer Lois Poisson Scott Polacek David Prestigiacomo Linda Preston

Barb Pyke Gary Pyke Kelly Rank Robert Runnels Josephine Sampson David Schein Diane Schleck Carlton Schultz Elizabeth Scopp Sharon Simon Sharon Singleton Beverly Sluka St. Joseph’s Congregation James Stenulson Annette Stockhausen Robert Sylla Lynn Thornhill Jeanine Traxel Brian Trinastic David Trinastic Dennis Trinastic Marcia Trinastic Sandra Trinastic Doris Trinkl Allan Urban John Ustruck Bruce Wachholz J. Boettner Ward Ronald Wardinski Russell Watkins Diana Watkins Bruce Wegner Julie Wetzel Florence Wildes Tony Wittmann Lee Woyahn Rodney Woznicki Rick Woznicki Steven Woznicki Marjorie Wresic Shoko Yukioka Susan Zakrzewski NOTE: These donations were recorded from September 1 thru December 20, 2013.

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

Roger Beers

Wes Geissler

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Lori Biersack

Lorraine Hanson

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Mary Bignell

Cheryl Hartwell

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Terry Brott

Scott Herman

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F.R. Dengel

Mary Hernandez

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Jerome Dieterich

Dennis Hickethier

In MEMORIAMS

impact on the ones they’ve left behind.

MEMORIAM In MEMORIAMS

MEMORIAMS In MEMORIAMS ‘

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Elaine Dings

George Kalb

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Karen Duffy

Larry Leranth

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Charles Ego

Ronald Soppa

MEMORIAM ‘

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Arnold Flann

Billie Sowaske

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Christopher Gallun

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46 /

CORRECTIONS

Corrections for our November 2013 issue 1) The Baur family name was inadvertently absent from the Cover Story in our last HopeLine issue. We regret the omission

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and are tremendously grateful to Sharon Baur for writing and sharing her personal journey with ALS. 2) On Page 8 of the same issue, the article concerning the $500,000 award for improved ALS clinical trials was a repeat of an adjoining article. We have reprinted the correct article in its entirety on Pages 13-14 of this issue.

Th e A LS速 Association Wisconsin C hapter alsawi.org T (262) 784-5257