2014 A SEASON OF HOPE S UM M E R
Issue 2
INSIDE:
Carmen Downes Story 10 / Evening of Hope 26 / Lawrence A. Rand Award 30 / Banding Together 40
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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 IT’S TOO OUTDATED.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
26
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
20
Care Services Update
16
In Our Community
40
Contributions & Memorials
56
In Memoriams
58
2014 Lawrence A. Rand Award PAGE
30 WHERE TO FIND US: alsawi.org Facebook.com/ALSAWisconsin Twitter.com/ALSAWisconsin YouTube.com/User/ALSAWisconsin
The Ted Haakonson Story PAGE
32
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 Kathryn A. Keppel Joanne Blaesing John Schleicher Danielle Tonelli Mathai Benjamin Becker Holly Blake Mary Brennan Druml Laura Hinrichsen Jan Kaufman Mary Beth Schlecht Thomas Kettler 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 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 Dan O’Donnell Jim Palmer Signe Redner Tim & Trickett Wendler
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Executive Director:
D
ear Friends,
Thank you to all the attendees, sponsors and volunteers who helped make the 2014 Evening of Hope a record-breaking event, raising more than $330,000 for ALS research. It’s your ongoing support that allows us to hope for aggressive treatment and an eventual cure for ALS. Twenty-one years of unwavering commitment to this event has raised awareness and, more importantly, much-needed research dollars. It was our privilege to have Suzanne and Suzette Malveaux as this year’s keynote speakers. They shared the very personal experience of their mother’s journey with ALS. As always, a shared journey reminds us that we stand together in our support for loved ones combating this horrendous disease. A special thank you goes out to the Lampasona family, who so generously bought the Labrador puppy at the voice auction and then gave it to Suzanne Malveaux. Again, a heartfelt thank you to the ever-growing community of ALS supporters who were involved with the Evening of Hope. This event serves to honor the courage and spirit of all who have succumbed and those who continue to battle.
Melanie Roach-Bekos
on May 10th. Please begin talking to family, friends and neighbors about the upcoming Walk to Defeat ALS in your area. These events offer our best outreach opportunity to promote awareness and raise funds. Registration for all Wisconsin Walks is now open, and we encourage you to put together a team and register at: walktodefeatals.org. As baseball is forever linked to ALS, July 11th marks our 3rd annual Chasin’ A Cure tailgate. This private tailgate will feature the edgy country music of Chasin Mason, a Sobelman’s burger, Miller beer, Jimmy Luv’s Bloody Mary’s, soda and t-shirt. Plus a loge-level seat to the Brewers-Cardinals game. Tickets are now available at: alsawi.org. We hope you can join us. Finally, I’d like to thank Kirk Topel and Carrie Schmidt from Hal’s Harley-Davidson, who worked tirelessly on hosting the April 5th Toast for Hope. The sock hop was a blast, and all proceeds raised will certainly make a difference in the lives of patients and families affected by ALS. Spring always heralds new hope. Especially with the ongoing dedication, support and contributions of caring people like you. I thank each and every one of you. Thank you.
Please note that May is ALS Awareness month in Wisconsin. In addition, our Advocacy Chairs will be traveling to Washington, DC with delegates representing the Wisconsin Chapter to assure that our voices continue to be heard. Our 2014 Walk season also kicks off in May, with the Janesville Walk to Defeat ALS
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Upcoming EVENTS 2014 ALSA-WI EVENTS
2014 COMMUNITY EVENTS
Janesville Walk to Defeat ALS® May 10, Lion’s Beach Park
Zumbathon // May 17, Brooklyn Community Center Ashely Anderson: ashleyjoanderson@yahoo.com
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
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 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 Ferg’s Fighters Hitting For A Cure in Memory of Paul Schmitter August 2, Kettle Moraine Golf Club Dawn Schmitter: blondie1972@ymail.com / 262.206.4407 WAC “Chips In” Golf Outing // August 22, Ironwood Golf Course 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 / 920.684.3225
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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
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T
May 10, 2014
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September 27, 2014
Lions Beach Park T
Mound View Park
Appleton, Wisconsin T September 27, 2014 T Appleton Memorial Park Milwaukee, Wisconsin
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October 12, 2014
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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.
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WHERE THERE’S A WILL, THERE’S A WAY By Natalie Jansky
The ALS Association Wisconsin Chapter hired me one year ago. I’m the first staff member added in years, and the youngest by…well, let’s just say I’m the youngest staffer. I would write about why I’m so fortunate to be a part of it all, but I’m not the one who’s important. The important ones are the women I stand alongside every day—the ones who informed me at my interview that we’ve only scratched the surface of what can be done to find a cure for ALS. That initial conversation really hit home when I met the woman who first scratched the surface: Carmen Downes, a visionary leader very much ahead of her time. Her husband, Dick, was diagnosed with ALS in 1984. When their doctor told them he couldn’t help, Carmen began looking for people who could guide them through the disease’s unfamiliar and frightening territory. She contacted doctors from around the world, and ALS Association Chapters in other states— leading to a conversation with a California Chapter staff member who gave her the idea to start a Wisconsin Chapter. “Just tell me what to do,” Carmen said. And then she set about doing it, starting with a game plan hatched around her dining room table. As she elicited help from others, she refused to take no for an answer. Not only for her husband’s sake, but for all the other families affected by ALS, too.
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Carmen began by convincing Larry Sanders to serve as the Chapter’s President, which was easy. “All I had to say to Larry was that I need him,” she said. In turn, Larry and one of Carmen’s four sons, Curt, planned the Chapter’ first fundraising event—a volleyball tournament that ultimately raised $3,000. That event, and all those that followed, raised much-needed funds and helped to firmly establish the newly formed Chapter and its ten-person support group. Next, Chris Schulz and Lorraine Brown joined the Chapter and made it even stronger. Families began looking to them for answers. “When people came into the support group, I insisted that they hug,” Carmen said. “Those hugs united us. They made us feel what needed to be felt.” The Chapter’s biggest turning point came when Jan and Jeff Kaufman joined. “It exploded,” Carmen said. “They were the blood we needed. They refused to give up.”
“
During the Milwaukee Run/Walk, my wife and I stood on top of the hill and took pictures of the 6,000 people we saw below us,” said Curt. “It was so surreal, knowing it all started with my mom. It started with her taking a chance!”
The support group became a virtual second family to its members, and created a helpful and comforting community where patients and caregivers felt less isolated. “You got everyone to talk,” said Jan. “The support groups were always happy.” For a full decade after Dick passed away, Carmen continued to attend the support groups. “When I turned the Chapter over, I remember thinking, ‘I hope they don’t lose this,’” she says. Carmen takes special pride in seeing how much her initial seed has grown. But she also knows the work needed to discover a cure is far from over. Her sons and their wives, who’ve played a large role in Carmen’s accomplishments and continue to share her goal, are understandably proud of her.
“During the Milwaukee Run/Walk, my wife and I stood on top of the hill and took pictures of the 6,000 people we saw below us,” said Curt. “It was so surreal, knowing it all started with my mom. It started with her taking a chance!” Looking at each of her sons and their wives, Carmen beams with pride. Knowing that Curt is joining the Chapter’s ALS Leadership Team makes her smile even more. We know Curt and all the other Chapter leaders will continue working relentlessly to find answers to the questions Carmen raised more than 30 years ago. “Where there’s a will, there’s a way,” Carmen is fond of saying. And if my wonderful first year at the Chapter has shown me anything, it’s that there’s no shortage of will in this amazing organization.
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Research UPDATES
Two separate studies focusing on the TDP-43 gene announced discoveries in February and March.
STUDY 1
Loss Of ALS-Related Protein Causes Disease In Animal Model, Suggesting Therapy Target Washington, D.C. (March 12, 2014)—In work supported by The ALS Association, researchers have shown that loss of an ALS-related protein causes degeneration of motor neurons, the cells affected in the disease. The study was published in the journal Proceedings of the National Academy of Sciences USA. Aggregates of TDP-43 protein are found in dying motor neurons in almost all cases of ALS. How those aggregates contribute to the disease process is unknown. One possibility is that the accumulation of TDP-43 protein in the aggregates reduces the amount of functional protein, and that reduction contributes to the dysfunction and eventual death of motor neurons. To test that possibility, researchers led by Associationsupported scientist Zuoshang Xu, M.D., Ph.D., of the University of Massachusetts Medical School in Worcester, partially silenced the TDP-43 gene in the central nervous system in mice, primarily in support cells called astrocytes. Affected mice developed a progressive neurodegenerative disease that ultimately led to paralysis and death. Loss of TDP-43 led to changes in the levels of multiple other proteins, an effect which was also observed in part in the spinal cords of humans with ALS. “These important results tell us that loss of TDP-43 may contribute to the disease process and amplify previous findings on the importance of astrocytes in the disease process,” said Lucie Bruijn, Ph.D., MBA, Chief Scientist for The Association. “If further experiments confirm the role of loss of TDP-43, therapies that prevent TDP43 aggregation, or replace its lost function, could be a valuable treatment approach.”
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STUDY 2
ALS Protein Risks Misfolding To Do Its Normal Function Washington, D.C. (February 21, 2013)—In work supported by The ALS Association, researchers have shown that a prominent ALS-related protein may misfold as a result of its normal function, an insight that may help tailor therapies designed to prevent misfolding. The study was published in the Journal of Biological Chemistry. ALS (amyotrophic lateral sclerosis), often referred to as Lou Gehrig’s Disease, is a progressive neurodegenerative disease that affects neurons (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 no life-prolonging treatments for the disease. TDP-43 is a protein with normal roles in processing RNA, the cellular messenger for DNA. Misfolded TDP43 is found in protein aggregates in the motor neurons of almost all people with ALS. The consequence of this misfolding and aggregation is not clear. To perform its normal job, TDP-43 must convert between alternative folded states, analogous to the open and closed states of an umbrella. In this study, researchers found during the conversion between these states, TDP-43 entered an intermediate state in which there was a high risk of becoming misfolded and losing its function, the first step in forming aggregates. The likelihood of misfolding could be increased by cellular stresses known to be associated with ALS. “This work gives us new information about the normal behavior of this important protein,” said Lucie Bruijn,
Continued
STUDY 2
ALS Protein Risks Misfolding To Do Its Normal Function Ph.D., Chief Scientist for The Association. “By understanding the risk factors for misfolding, we may be able to design treatments that lessen those risks, while still allowing TDP-43 to do its job.” The research was performed by Brian Mackness, Ph.D., under the leadership of Jill Zitzewitz, Ph.D., both of University of Massachusetts Medical School in Worcester, Mass., and was funded by The Jeff Kaufman Fund of The ALS Association, Wisconsin Chapter.
STUDY 3
New Technique Generates ALS-Derived Muscle for Study Washington, D.C. (March 25, 2014)—In work supported by The ALS Association, scientists have developed a new method for generating muscle cells from skin tissue of people with ALS, which will be valuable for research. The study was published in the journal Stem Cells Translational Medicine. ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig’s Disease, is a progressive neurodegenerative disease that affects neurons (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 no life-prolonging treatments for the disease. The scientific team was led by Masatoshi Suzuki, Ph.D., D.V.M., and included Allison Ebert, Ph.D., both of the University of Wisconsin at Madison. Their work was supported by the Wisconsin Chapter of The ALS Association. The researchers showed that muscle progenitor cells could be efficiently produced from stem cells in cell culture, using a new combination of growth factors. The method works with either human embryonic stem cells or induced pluripotent stem cells (iPS cells), which are derived from skin cells. In the study, the researchers transformed iPS cells from two different people with familial forms of ALS, one caused by mutations in the SOD1 gene and the other by mutations in the VAPB gene. “The ability to generate muscle cells from ALS-related tissue is important, because we need to understand more about the role of muscle in the disease process,” said Lucie Bruijn, Ph.D., MBA, Chief Scientist for The Association. “We know an early step in ALS is loss of contact between muscle and motor neuron. This system should allow us to determine more about that important step and determine whether, if we can delay it, we can prolong both neuron health and muscle function.”
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Continued
The ALS Association Wisconsin Chapter and the University of Wisconsin Milwaukee/Helen Bader School of Social Welfare Âť
ALS FAMILY RESEARCH OPPORTUNITY
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, many programs and services exist to support them and to provide them with resources for helping them take care of their loved one. For children in the home, however, that often is not the case. Many kids help take care of a family member with ALS, but they receive little support, or even acknowledgment that they help their family member, because there are not any programs to support them. Whether they care for a family member with ALS, or they simply want to talk to someone about what it is like to have a family member with ALS, kids need to be supported. Unfortunately, we do not know how many kids out there have a family member with ALS or help care for a family member with ALS. This study will gather information about kids who have a family member with ALS, as well as those who do something to take care of that family member, so that the ALS Association can create programs to support these kids. Dr. Melinda Kavanaugh has worked for years with families affected by Huntington’s disease and other neurological disorders. She is 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 give Dr. Kavanaugh a call or email. More details on the program as set forth on the flyer on this page.
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Support Groups & MEETINGS ALS Caregiver Dinner GROUP MEETING LOCATIONS THE FOLLOWING ARE THE MEETING LOCATIONS FOR OUR ALS CAREGIVER DINNER OUTINGS. The group meets the fourth Thursday of the month at 7pm. This is a special group for all individuals who 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 good information and tips in a very relaxed environment. Please contact Robin Stanczyk at 262.402.8148 or robin@alsawi.org to RSVP for the dinner outing or for more information. We are looking forward to seeing you!
Thursday, May 22, 2014 Saz’s State House Restaurant 5539 West State Street Milwaukee, WI 53208 414.453.2410
Thursday, June 26, 2014 That’s Amore 5080 South 108th Street Hales Corners, WI 53130 414.425.7150
Thursday, July 24, 2014 La Fuente 9155 West Bluemound Road Milwaukee, WI 53226 414.771.9900
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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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Director of Care Services:
Lori Banker-Horner
Dear Chapter Members, Spring is always a welcome change and represents a very important time in the ALS Community. May is National ALS Awareness Month and is a time for all of us to increase our efforts to get the word out and raise ALS awareness. ALS awareness is a constant focus of the Wisconsin Chapter and one of the most important steps toward putting an end to this disease. For change to happen, others need to be aware of how devastating ALS is and the challenges faced by individuals and their families. Sharing even a little bit of your knowledge and experience with ALS to someone who knows little or nothing about the disease can go a long way. During the month of May, challenge yourself to share what you know about ALS with a neighbor, friend, colleague or even a stranger.
For more information on ALS Public Policy and how you can become an ALS Advocate, please visit our website at alsawi.org or the ALS Association National website atalsa.org. The ALS Public Policy team at our National Office stays on top of all issues that could directly affect individuals with ALS and their families. With the recent Medicare changes in coverage of durable medical equipment/ communication devices and respiratory equipment—among other, more general changes in coverage— it’s even more imperative for everyone to stay updated. The Chapter will continue to work in conjunction with our National Public Policy team to ensure that our Chapter members are kept informed on changes that may affect them, as well as what they can do to assist in advocacy efforts. We are in this together! »
ALS Awareness Month / 17
Continued
» Our 10th annual ALS Care and Research Symposium will be held on Saturday, May 17th at the Sheraton Milwaukee Brookfield Hotel. It’s hard to believe that we are in our 10th year! This event has grown each and every year, and this year promises to be full of valuable information from ALS Specialists, other health care professionals and individuals living with ALS. Area health care businesses and organizations will be present as exhibitors—providing information on the different services and resources available to our Chapter members.
We are very pleased to welcome Michael Benatar, M.D., PhD., as our keynote speaker this year. Dr. Benatar is an Associate Professor of Neurology and of Public Health Sciences, and Chief of the Neuromuscular Division at the University of Miami, where he also holds the Walter Bradley Chair in ALS Research. He directs an active clinical and translational research program focused on ALS biomarker and therapy development funded by the FDA, CDC, DOD, MDA and the ALS Association. He is the principal investigator on a randomized controlled trial of arimoclomol in people with SOD1+ familial ALS, and Pre-symptomatic familial ALS (Pre-fALS), a systematic and longitudinal biomarker study of people at genetic risk for developing ALS. Dr. Benatar will be presenting an update on ALS research, as well as the “Challenges to Therapeutic Development in ALS.” We’re expecting a very interesting and enlightening presentation and are so glad he will be joining us! Registration brochures have been mailed and email reminders will continue to be sent. Individuals can register by mail, fax or online at www.alsawi.org. The schedule for the day is also available on the Chapter website. If you have any questions, please contact Janet Gauger at 414.831.3984 or janet@alsawi.org. We look forward to seeing you there! Your Chapter Care Services staff is available to all those living with ALS, as well as their families, friends and other health care professionals to answer questions, provide resources and support or simply to listen. Sometimes it’s just a matter of having someone available to help problem-solve or even help determine where to start! ALS is such a challenging disease and we are here to help in any way we can—by phone, email, home or facility visit. Our Care Services staff members have also met with Chapter members by SKYPE! If you have a question, concern or are unsure where to start, please contact a member of the Care Services staff by calling 262.784.5257 or emailing lori@alsawi.org. Let’s work together and do what we can to raise ALS awareness, and make ALS Awareness Month count!!
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Save
The Dates!
UPCOMING SUPPORT GROUP SUMMER GATHERINGS CHICKEN Q IN LA CROSSE!
Members of the Chapter’s La Crosse Area Support Group will be having a Chicken Q, Raffle and Silent Auction on Sunday, June 29th. This event will be held from 11am to 4pm at Veterans Memorial Park—Shelter Houses #3 and #4. Veterans Memorial Park is located off of Highway 16 near West Salem. Follow the signs in the park. The chicken dinner will be prepared by Rooster Andy’s and includes: one-half grilled chicken, potato salad, baked beans and dinner roll! A variety of items will be available via both a fish bowl raffle and silent auction. This is a special event to raise awareness of ALS and of the monthly ALS Support Group held at Gundersen Lutheran in La Crosse! Come and enjoy!! For more information please contact Connie Troyanek at 608.788.0670 or cltroyanek@gmail.com.
SUMMER POTLUCK IN OSHKOSH
The Fox Valley Area ALS Support Group will hold a Summer Potluck on Tuesday, July 15, 2014, from 6:30 to 8pm. The Potluck will be held at All Saints Lutheran Church in Oshkosh, Wisconsin.
PICNIC IN NORTHEAST WISCONSIN
The Northeast Wisconsin ALS Support Group is hosting a Summer Picnic on Wednesday, July 9, 2014, from 6 to 8pm. Watch your mail/email for more information regarding plans and location!
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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: 11:00am to 1:00pm 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: 7:00pm Place: Locations vary—locations are available on the Chapter Website: 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: 6:30pm to 8:00pm 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: 6:00pm to 7:30pm 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: 3:00pm to 5:00pm 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: 6:00pm to 8:00pm 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: 1:00pm to 3:00pm 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: 12:00pm to 2:30pm Place: OSF St. Anthony Medical Center Address: 5666 E. State Street Rockford, Illinois Contact: Tony Cook at 312.257.5434 ADDITIONAL SUPPORT GROUPS AND MEETINGS
Madison MDA/ALS Support Group Date: Second Tuesday of each month Time: 12:30pm to 2:00pm Place: Dean Clinic Address: 700 S. Park Street in Deli Room 1, next to Fit N Fresh, on the Lower Level, Madison, Wisconsin Contact: Mary at 608.222.3269
Milwaukee Ventilator Users Support Group Date: First Tuesday of each month Time: 6:30pm to 8:00pm 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: 1:00pm to 2:30pm Place: First Street Clinic Address: 420 East First Street, Aurora Room, 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. For questions or to RSVP call 218.786.5399
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CHAPTER EQUIPMENT LOAN UPDATE!
W
ith the Chapter’s growth throughout Wisconsin, we are continually working on ways in which 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
Our Equipment Loan Program now includes another great partner! NuMotion, a national durable medical equipment company, has provided significant space and extra assistance; which has allowed the Chapter to combine the Milwaukee area’s power and nonpower equipment (previously stored at Barrett Moving and Storage Company in Waukesha and Knueppel Healthcare in West Allis) in their Oak Creek and Madison sites. This consolidation will allow our Chapter members throughout the state, more access to our equipment loan program. The transfer of the equipment was done in late November 2013 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 staff of Barrett Moving and Storage Company for over 10 years of unbelievable service and support, along with the donation of a large storage space. They also generously donated their time and trucks to assist with the recent transfer of equipment. Everyone at Barrett was ready to help in any way possible and we know 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 along-side of 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 and we can’t thank them enough. The ALS Association Wisconsin Chapter depends on wonderful partnerships such as these and we appreciate and sincerely thank everyone in these organizations for sharing their time and expertise and resources. We could not do what we do without them. If you have questions on the Chapter’s Equipment Loan Program 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
&
S ave 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 WELCOME, DEB ROBERTS! NEW CENTRAL WISCONSIN ALS SUPPORT GROUP FACILITATOR As I take on the role of the facilitator for the Central Wisconsin ALS Support Group, I have been given the opportunity to introduce myself. My work experience includes 18 years as a medical assistant at a medical clinic in Wisconsin Rapids. For the past 15 years I have worked as a registered nurse. As an R.N., I have worked Medical/Surgical units in hospitals, did home care and hospice and most recently long-term care in facilities. Currently, I have an R.N. position at the Veterans Home in King, Wisconsin. My first experiences working with and supporting ALS patients and their families was through my hospice experience. Now, a very dear friend of my family has ALS. It is through this friend that I have become involved with the local ALS support group.
The Central Wisconsin ALS Support Group meets the 2nd Monday of each month from 6pm-7:30pm at St. Luke’s Lutheran Church 2011 10th Street South in Wisconsin Rapids. (Please see Support Group Information Listing on page 15 of this issue)
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I am a life-long resident of the Nekoosa area. My husband and I were high school sweethearts, we married and raised our two children on the land that his great-great-grandpa homesteaded. Sunday afternoons usually include our children, their spouses and two granddaughters. I’ve grown to enjoy this area where I live. It is the simple things that I most enjoy, like flying kites, blowing bubbles or sledding down the hill in our backyard. Though my family teases me, I know they enjoy these times as much as I do. Why else would I make sure that the granddaughters got kites for Easter even though they were both under a year old? Family is important to me. We are all at different stages of our lives and we are accepting of what the other member is facing. As a facilitator, one of my goals is to meet people where they are at in their lives. Each member of my family adds knowledge, experience and personality to our family. Each member of our support group adds their own knowledge, experience and personality to the group. Together we can make a difference in each other’s lives. I look forward to this new opportunity ~ Deb
THANK YOU,
Clive Svendson & Company Cedars-Sinai February 2014 The Front Line By Jim Eutizzi
How can you really appreciate a battle without going to the front line? There often is a disconnect that occurs. This can often happen in corporations. As a field rep, we would often get our direction from corporate and oftentimes felt that they didn’t really understand our needs or issues. The good leaders would travel with reps to gain true knowledge of the issues. How about a patient living and feeding off of hope? When you have no cure, that is all you hold onto sometimes. I can honestly say as time goes on and more and more studies fail, sometimes that hope lessens. Thankfully, for me, I got a much-needed shot of adrenaline. I felt like General MacArthur visiting the troops on the front line. When he visited them, he saw with his own eyes what was going on. And in return, they were reinvigorated to keep battling and to win the war. In February of this year, I was able to visit Cedars-Sinai in Los Angeles and tour the ALS research facility. Like MacArthur, I saw with my own eyes and heard with my own ears the strides the researchers are making in this battle against ALS. It is too complex to discuss here, but I saw the answers through a microscope that can and will delay or stop progression of ALS. Granted, it has only worked on rats, but a human study has been funded and will start in about a year. If all goes well, this may be available to patients in as soon as three years. I am an optimist by nature, but I really don’t think
I’m putting the cart before the horse. I believe in the scientists and researchers working in the lab. I felt what they did wasn’t just a job, but a mission to provide a solution for patients like myself. Heck, they even said they read my blog and felt inspired by it. If what they are doing is being done elsewhere throughout the world, then solutions will be forthcoming. Unfortunately, not all patients have the luxury of time. But I believe there is light at the end of the tunnel. When I was saying my goodbyes, the researchers were kind enough to say how honored they were to meet me, and how it motivated them to keep up the fight. I explained how much the visit meant to me mentally and thanked them for what they were doing. After my diagnosis, I promised myself that I would never give up hope or stop fighting, and this was just the jolt I needed. I wish every ALS patient could visit the font line like I did. Then they would also see that there are brilliant difference makers out there working diligently to end the devastation of ALS in our world.
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2014 Evening of HOPE Thank you to every one who helped us raise $330,000 for ALS research at the 2014 Evening of Hope. It was an amazing night that showcased your support and passion, and will bring us closer to finding the missing pieces needed to solve this puzzle. Photos by Jordan Johansen Photography jordanejohansen.com
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THANK YOU,
2014 Evening of Hope Sponsors Platinum Sponsors Bacardi U.S.A., Inc. Johnson Controls Diamond Sponsors The Boesch Family Nicholas Family Foundation Gold Sponsors The Fox Company Gimbel, Reilly, Guerin & Brown LLP Ogilvy & Mather Hal’s Harley-Davidson One Sweet Design Silver Sponsors Terrence & Elizabeth Canning Northwestern Mutual Foundation Paul Davis Restoration & Remodeling The Windhover Foundation/Quad Graphics
Friends Margaret Bell & Jennifer Quadracci Holly Blake Family And Friends Mrs. Joan Brennan Cabaniss Law Domnick Family And Friends Michael Fitzgerald Gene & Ruth Posner Foundation Franklyn & Anne Gimbel Global Manufacturing Corp. Jaci Haakonson Habush Habush Rottier Charitable Fund Stephen Hansen & Whitney Nichols, In Loving Memory Of Stuart Nichols Kettler Family & Friends KVG Building Corp. Merrill Lynch Wealth Management Dave Mesick Dale Rauwerdink Herkowski Stickler & Associates Pamela Isenberger
Bronze Sponsors Anthem Blue Cross Blue Shield The Barbi & Bell Families Clinicare Corporation The Gellatt Wannamaker Family Managed Health Services/Centene Corporation Medical College Of Wisconsin Dennis And Patty Terry Time Warner Cable
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Lawrence A. Rand Awards Ceremony San Diego, CA February 2014 Jim Eutizzi’s acceptance speech at the 2014 Leadership Summit Award Ceremony could not have been more perfect. The audience was left speechless and inspired, and the Wisconsin Chapter’s representatives beamed with pride as he accepted the Lawrence A. Rand Prize that was so well deserved.
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In Hope Ted Haakonson’s Story Photos by Jeff Salzer | salzer.tv
You’ve heard people say “life turns on a dime?” Or “what a difference a year makes?” I had no idea how those sayings would come to define my life. The day my life turned on a dime was June 20th of 2012—the day I now call the start of my “New Normal”.
That was the day I was diagnosed with ALS.
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T
he clues, though, started months before. I just didn’t know it. In December of 2011, I was running down the stairs when I slipped and fell on top of the steps. Suddenly, “bang”, I hit my head and was literally seeing stars. I had tried to catch myself, and ended up catching my left arm on the railing. The pain shot through my shoulder blade like a bullet. It dulled pretty quickly, so I didn’t follow up with my doctor until later that week. He sent me to rehabilitation and my shoulder seemed to improve. Then, in March of 2012, I had my routine medical checkup. The doctor asked if there were “any new changes/concerns” since my last visit. I mentioned that I was having trouble with my thumb. I told him a story about flying my remote-controlled airplane and needing to have my neighbor land my plane. We laughed at how Mike, the neighbor, thought I was teasing and said that I should “land my own damn plane”. But I quickly explained that my right thumb couldn’t move. Now, honestly, I thought it was just too cold. After all, it was March and only 18 degrees outside. I continued to explain that I had to run my hands under the water to warm them up because they were so stiff. I had no other symptoms, so the doctor just treated me for a sprain/strain on the thumb. He gave
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me a brace and had me follow up in a few weeks. When it didn’t improve, the doctor talked to me about going to see a neurologist. He said it was just a precaution, since I had also slipped down the steps back in December.
The appointment with the neurologist was the moment my life changed. The neurologist ran an EMG test, and to be honest I didn’t think much of why that particular test was being ordered. The neurologist then ordered an MRI, in addition to a more extensive EMG. She ran the test herself, and when she was done, she pushed her chair back and gave me a look. You’ve seen “the look”, like a teacher looking over the top of her glasses. After that, she looked down and started to clear her throat. In that split second, I got an awful feeling in the pit of my stomach. Then, with unusual calm, she asked if my wife and I had ever heard of a neuromuscular disease. We both shook our heads no. Then, the doctor asked if we had ever heard of Amyotrophic Lateral Sclerosis. The silence was deafening, as if a grenade had gone off in the room and we were no longer capable of hearing. I could see the doctor talking, but I could not hear a word. I was focused on the words: Amyotrophic Lateral Sclerosis…trying to figure out what that was. The more I focused on the words, the faster they ran through my mind. Then, suddenly, I picked up my head and said to the doctor, “Are you telling me that I have ALS… Lou Gehrig’s Disease?” The doctor, who had been talking this whole time, turned and simply said, “yes”. My life at that point was forever changed.
After the diagnosis, you feel so helpless. That helplessness turns into hopelessness.
But you realize very quickly that you can’t live without
H O P E. We traveled to Mayo Clinic for our second opinion. It took a little less than a week for them to confirm that I did indeed have ALS. The doctors tell me it’s unusual that they caught the ALS so early. I’m a healthy guy, except that I have ALS. I later learned that my health history had provided them a baseline for the initial diagnosis and, now, my medical care. Developing tools to cope. Or should I say, “HOPE”. After the diagnosis, you feel so helpless. That helplessness turns into hopelessness. But you realize very quickly that you can’t live without HOPE. So we became driven to develop some tools to cope and hope. We started by “talking about it”.
How do I live…knowing I am going to die? I talk about it. I talk about the disease and I talk about what’s next. My wife and I talked to our families; we talked about it so that anyone who would listen could get a better understanding of this disease. I even talked to a class of nursing students who wanted to hear about my journey and ask questions about my disease. This is one of our tools in coping with my “New Normal”. It seems funny now to call it the “New Normal”. We describe it as living with ALS and all the challenges that it brings, while still making plans for the future and giving ourselves the flexibility to adapt.
A second tool that I use is trying to continue doing the things I love to do, while I’m still able to do them. When that is no longer an option, we ADAPT. We do that as quickly as we can so we don’t waste time thinking about what ALS takes from us. I keep a very positive attitude. I don’t want to waste a moment. For example, I love cooking. I make over a dozen different types of gourmet cookies. I used to be able to put them together and bake them the same day. Now, I put them together one day, and bake them the next. There are some days that I just don’t have the strength to make them, so I do them another day. I’ve even put cookies together and portioned them off, to freeze them. Then, I bake as I need them.
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I love grilling and own a “Big Green Egg”, which is a ceramic smoker/grill. I use it year-round and probably grill out three to four times a week. It’s not unusual to find the Big Green Egg smoking away in the yard, as pulled pork smokes for over 18 hours. However, I no longer grill in below zero temperatures. My hands just don’t work as well in the colder air. I also love flying remote-controlled airplanes. In fact, we have a flying club in our neighborhood called “The IFB Club”. IFB stands for Inevitable Foam Bits. What’s that, you ask? It’s what happens when your plane makes a spectacular crash to the ground. And it’s the small bits of plane that you need to put it back together, before you
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can fly again. I can’t always do that small detail work anymore, so my friends help me assemble them. I love woodworking, too, and have built sofa tables, chairs, stools, spoons and much more. I now get help from my dad, who’s excellent in helping me to adapt. We use jigs to put together the chairs, and I paint the wood before I assemble them. It’s a slower process now, but I do a little at a time. I take more breaks than I had to before, but enjoy what I do even more. In fact, in hindsight, I realize that it was from woodworking that I first noticed the strain in my right thumb. But I had dismissed it, thinking it was probably a little arthritis or carpal tunnel. After
diagnosis, you start to look back at the signs that you didn’t think much of at the time; you begin to put together the pieces of what turned out to be ALS symptoms. I was working on this pink lifeguard chair when I first noticed the strain in my thumb. Never in my wildest dreams would I have ever considered that to be a sign of ALS. I retired with disability from the Green Bay Correctional Institute, where I worked for 23 years: 18 as a Chef and five as an Officer. As rare as ALS is throughout the United States, how unusual would it be to have two officers from the same facility diagnosed with that disease? But that’s exactly what happened. Jim Paape, a fellow Officer who worked at
the correctional institute for over 20 years, had to retire due to ALS about two years prior to my own diagnosis. Right after I was diagnosed, Jim and his wife Liz got together with us and helped us navigate some of the questions we had about ALS. In fact, they were the first people to talk to us about “clinical trials.” That brings me to the third tool I use daily: the determination “to do something!” I want to stay active and do anything I can to help. So my wife started researching clinical trials. We both knew that getting into a clinical trial would be a long shot. We used clinicaltrials.org as our website, and in fall 2012 my wife found a clinical trial being conducted at Mayo Clinic in Rochester, Minnesota. This Phase I trial was a “Dose-escalation Safety Trial”, and would determine if it would be safe to inject your own adult stem cells into your spinal cord. On February 13, 2013, Mayo Clinic contacted us and invited us to go through the screening process. If we passed, we would be asked to participate in the trial. It was made clear in our very first phone call, however, that this trial would NOT be a cure. We traveled to Mayo in late March and passed the screening process. They took fat cells from my lower abdomen and over the next seven to eight weeks began growing my own stem cells. Can you believe it, from my fat?! In late May, (less than a year after my initial diagnosis), I had my own stem cells injected into my spinal cord. I was doing something to help.
Since the trial, I’ve been asked several times why I would participate in a clinical trial. I always tell people that if I couldn’t benefit from the trial myself, then I was going to participate to help someone else. Nobody knows what causes ALS. I truly feel that in order to move forward with finding a cure, I needed to step up and participate. I know what I’m going to die from; I will die from ALS. But, while I’m here, I want to do something to help others. I’ve always been the guy who does that. And this trial gave me hope, just knowing that there was a team of people out there looking for the cure. It’s been eight months since I received my one-time dosage of stem cells, to determine the safety of injecting them into my spinal cord. I am doing well and have had no side effects to date. In fact, I’ve experienced several positive effects, post stem cells, which we’ve concluded are a result of the trial. My fatigue is significantly reduced. Also, before stem cells, I was losing weight. Since the injection, I’ve gained seven pounds and have maintained the weight. The biggest change involves the twitching that occurs with ALS. Soon after the stem cells, it was reduced by about 90%. Since then, some of the twitching has returned, but not to the level it was prior to stem cells. My ALS is still progressing, but so far, at a significantly reduced rate.
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I have ALS—Lou Gehrig’s disease. It’s an equal opportunity disease, which does not discriminate. You could have all the money in the world, and still not beat this disease. Still, I feel that I am blessed. I have the strong support of my family and friends, who have joined my wife and me in the battle to fight ALS. The team at Mayo Clinic gives a voice to those with ALS, and helps fight the fight with their clinical trials. And, all the people who care really help in the fight too, by holding benefits and running races in order to raise money for research to find a cure.
This disease is best fought “out loud”, with people talking about it, and continuing to raise awareness. My journey has just begun, with a little less than two years into it. But I do it knowing I am not fighting alone. Therefore, I HOPE!
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THANK YOU, BANDING TOGETHER Eclipse Center | March 2014 Thanks to the Banding Together Team and Dailey Family who raised ALS awareness and funds in honor of Ken Dailey. Hundreds of rockers showed up to the Eclipse Center in Beloit to not only support Ken but all other families throughout the state who are fighting the same fight.
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BOELTERS JEWELRY Boelters Jewelry raised $500 for our Chapter by selling “Black Ice� earrings to its customers in honor of ALS patient Bernette Seiler. Thank you to the Boelters staff who helped to promote the sale and to the customers who purchased the earrings in an effort to not only help Bernette, but all other ALS patients living in Wisconsin.
Bernette and her close-knit family have had a major impact on their neighbors such as those at Boelters Jewelry, shedding light on ALS and what can be done to help those affected by it.
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BINGO Fundraiser Turley Family-style
Despite the polar vortex, Team Turley—with the help of 30 copious supporters and the staff at Hamburger Mary’s— held a Sunday night BINGO with a prize drawing and 50/50 raffle that raised $670 for the ALS Association Wisconsin Chapter’s patient and family services.
Toast Hope 12th Annual
Saturday, April 5th, 2014
to
To Benefit ALS Research
The 12th Annual Toast to Hope was a great success and a boppin’ time thanks to the Hal’s Harley-Davidson staff, our volunteers and generous attendees. It raised more than $35,300 to benefit research and patients throughout the state. Our Chapter and the families we serve are so grateful for the continued support. We can’t wait to Toast to Hope again next year.
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Support comes in many different forms – including poodle skirts and Mickey Mouse caps. Thanks to all of those who came in costume.
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A special thanks to our guest speakers, Jim Eutizzi and Trickett Wendler, who embody what the event is all about—hope.
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THANK YOU,
Wisconsin Collegiate DECA Wisconsin Collegiate DECA is a student-run organization that prepares students for their careers. The students complete a civic consciousness project each year and chose to fundraise for our Wisconsin Chapter in memory of one the organization’s past presidents.
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A SPECIAL
VALENTINE’S DAY STORY By Sarah Andrew-Vaughan
Trickett Wendler, featured in the last HopeLine issue’s cover story, is sharing this story written by her friend Sarah Andrew-Vaughan. It originally appeared in the Ann Arbor Active Against ALS Newsletter and has been condensed for space considerations. In June 2013, at the age of 39, Trickett Wendler was diagnosed with a rare familial form of ALS, the fast progressive SOD1 gene. Trickett was in a wheelchair by July. This past Valentine’s Day, she was invited by her daughter’s 5th grade teacher, Mrs. Ward, to speak to the class. Trickett expected hard questions from the curious students, but before she could catch her breath and put on her “no tears” face, a 10 year-old student asked, “How would you like $253 for medical bills and research for a cure?”
Mrs. Ward had prepared the class days before Trickett’s visit by quoting Dr. Stan Appel’s message to Congress: “ALS is not an incurable disease. It’s an underfunded disease.” A little boy asked the teacher, “What if we raised funds? Can we do that to help?” To Mrs. Ward’s surprise, this boy came back the next day with a pink donation box decorated with words of encouragement. Over the next two days, the fifth graders returned with contributions from families and piggy banks. The students made a seemingly small but profoundly moving gesture. They decided we can do something about this, and did. Wearing her heart on her sleeve, Trickett responded to the children’s sometimes difficult questions like: How do you stay strong and be there for your family? “I can be there for them,” she said, “because they’re here for me. My fifth grader has a lot of responsibility. She helps me get my socks and shoes on, and stands next to me so I don’t fall. My heroes are my family.” A child asked her if she would ever walk again. Later, Trickett reflected, “It’s hard because we were having an honest conversation and my realistic side knows it isn’t likely, but there is part of me that has hope. So I told them the truth, that I don’t know, but I really hope so.” As she wrote on her Facebook page, “These students teach me hope and how to keep my courage.” We encourage you to also be inspired by Trickett’s zest for life and her commitment to building awareness about ALS and raising research funds for a cure. You can follow her journey at: facebook.com/TeamTrickettWendler.
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Thank you,
Jim Eutizzi & Sarah Jansky Hakuna Matata
No
By Joseph Dejesus
BAD DAYS
Inspired by Jim’s Journey with ALS. A HERO’S VISIT It was a huge honor to have Jim Eutizzi speak to our class. I was blown away at the fact that Jim, who was affected by a fatal disease, still hung on the wings of hope. I was also surprised at the fact that he told our class that ever since he was diagnosed with ALS, he’s never had a bad day. Any man in the position that Jim is in would give up without hesitation. He taught us that instead of focusing on the negative things in life, focus on all the good your day can bring. As a matter of fact, I had one of my friends tell that when he heard Jim’s story, he tried his hardest to hold in his tears. Jim’s story isn’t any different than those myths of heroes taking on monsters. Jim is facing a monster of his own. He’s facing his Goliath. He’s facing ALS. LEGACY If I had to give any kind of advice to an entire room of people, I would tell them what Jim Eutizzi told our class. He told us to focus on the good things that life has to offer. Even if you think that you’re having a rotten day or think that your life couldn’t possibly get worse, just think of how Jim lives now. Although he has ALS, he continues to live a happy life. I would tell them of all the hardships that Jim and his family went through—but they still hung in there and they never gave up hope. POWER Power is a pretty small word. It’s just five letters long yet everyone tries to have it. Most think that to have power is to control something. It can take over the world in a storm if used incorrectly. Truth is, people go looking for power to control things, but they couldn’t be more wrong. The power you seek is already inside you. You want to control something? Start with yourself. You just need to know how to use it. For good or for bad. Only you have the power to control your actions. You have the power to stand for those who are bullied. You have the power to walk away from a fight. You have the power to shape yourself into something that others would look up to. You have the power to change how you and others see life. Only you have the power to change the world to a better place. A place with peace. A place with power to keep moving forward.
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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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WHEN IT MATTERS MOST ,
Together We Ride
2014
ALS .
.
.
|Lou Gehrig’s Disease|
BENEFIT RIDE
Dedicated to Richard Landvalter | Roberta Swift Kim Robbins | Larry Schultz | Terry Kammien, Thom Radler | Liza Fox & Countless Others
JUNE 7 WELCOME! SATURDAY, Sign up 9–10:30 am • Departure at 11 am ALL VEHICLES
From Chain BP • N2479 Cty Rd QQ • Waupaca $
20 PER DRIVER • $15 PER RIDER Ride Ends – 5 pm at Simpsons • Waupaca Food, Raffles, Door Prizes & Silent Auction.
Featuring Live Music From CottonMouth & Friends. Help find a cure and improve living a life with ALS.
Contact Tedd Mitchell @ 715-256-2513 | ALSBenefitRide@gmail.com
New for 2014! Register online at Facebook/ALSwaupacachapter 54 /
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Contributions & MEMORIALS MEMORIALS Bruce Bahneman Cynthia Chirafisi Tricia Sieg Mary Bansemar Nicol Befus Sarah Maio Julia Penn Jeniffer Tomaszewski Doris Barbian James Barbian Margarette Bassuener Paul Stensberg Robert Batten Constance Batten Denise Spokas Barbara Bauer Lori Krings Roger Beers Bill Ziemer Gail Ziemer Liz Ziemer John Beggan Laine Barresi Rebecca Bell Barbi Nanette Elder Danette Modica Joan Moran Leon Yu Michelle Yu John Braun Jill Blair-Smith Diane Bliese Lisa Krayer Ryan Krayer Kristine Woltmann Hal Youngblood Dr. John Brennan Robert Abendroth Peter Ament Christopher Ament Susan Barnhill Michael Bell David Berns Andrew Bolles Anne Bolles Joel Brennan James Brennan John Brennan Thomas and Mary Pat Brown Brian Brown Carolyn Butler Barbara Cahill Bart Calhoun John Christman Tom Cianciolo Charles Citrin Catherine Connelly Joanne Connolly
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Ellen Coplan Patrick Coplan Beth Costello Carla Cummings Jane Demasi Doris Derse Nashelle Dineen John Dirkse Divine Savior Holy Angels Gary Drapp Tom Druml John Dunn Lawrence Fehring Monica Fleming Susan Fowler Raymond Fox Robert Gerth Kristine Guest Jack Hanlon Michael Healy Patricia Healy Mark Heinen Mary Hornak Heidi Huber Mary Hughes Francis Hughes Joseph Jones Kathryn Keppel Thomas Kettler Michael Kuhn Madelyn Kujawski Candace Lesak Lisa Lingle Robert Madden Diane McGinn Teresa Mckenzie Medical College of Wisconsin Stephanie Merz Gary Millen Linda Milen Thomas Moore Mary Ann Mueller Deborah O’Connor Callahan William Otto Celleste Ptak Kevin Riley Lisa Riley Mary Rondeau Mark Rowbottom Margaret Schaaf Jeff Schwab Mary Lou Schwab David Sinense Meredith Skelton Phil Skrade Melinda Skrade Donald Sorensen
Daniel Taylor Kent and Marna Tess-Mattner Kathleen Whalen Lois Yanny Luann Zimmerman Terry Brott Marvin Voss Victor Busalacchi Kandi Krueger Donna Thompson Doug Thompson Mary Cantrall Edward Begalke Barbara Calbow Delores Cantrall Warren Cantrall Keri Doman Steve Doman Brian Donley Larry Donley George Doro Jim Dycus Bradley Falk Judy Gauger Glenn Guenther Edward McLaughlin Scott Mittelsteadt John Schaetzel Steve Carpenter Elizabeth Carpenter Mary A. Castino Pamela King Lisa Thompson Joann St. Peter Keith Christman Marlene Confare Stacy Rohleder-Fielden Lois Coxey Frederick Coxey Daniel Czachor Kathleen Czachor Elaine Dings Nanette Elder Susan Gorman Gerald Fahl Mary Fahl Paula Falish Christopher Gallun Lake Country Heating & Cooling, Inc. James Burton Joan Burton Dave Reynolds Kari Reynolds Holly Suhan Angele Vigder Bruce Weber Megan Weber Kelly Giese
Edith Giese Weston Geissler Dave Geissler Kathy Guirlinger Anita Hantzsch Cheryl Hartwell Natalie Jansky Dolores Hessler Meghan Hessler Richard Holyoke Kathleen Arenz Scott Imig Carrie Imig Edwin Karn Lois Karn Jeff Kaufman Frank Darabont Camp Esmeralda Eileen Healy Joseph Murray Nora Murray Susanne Kettler Mark Cohan Sharon Fitzsimons Geraldine Kowalski Ellen Kowalski Roger Kraatz Lorraine Kraatz Joan Kuglitsch Marion Kuglitsch Kathy Liesch Global Impact Mary Turner Dr. Mark Lochner Brighton Jones Emily Podboy Dennis Winchester Sandy Winchester Richard Lodi Gregory Lodi Marie Louis William Louis Ray & Blair MacArthur Bonnie Eastman Joseph Meagher Joann Meagher Phoebe Meyer Kristin Bird Raymond Curtis J Perkin Mitchell Morgan Nancy Weiler Marie Muenster Rozanne Roberts Barbara Mulligan Jonathan Mulligan Terrance Nugent Danette Modica Patrick O’Gara
Terri Beglinger Daryl Blumer Karen Bosold Lori Bukowski Carol Hanson Kathleen Huevler Robin Janse Patricia Mahler Anita Martin Margaret Metcalfe Kari Mueller Mary O’Gara Julianne O’Gara Kevin Pachucki Michael Robledo Kathy Yaeger Glen Olsen Robert Olsen Elaine Olson Edward Engen Merle Parker Nancy Parker Larry Paul Tracy Clough James Peterson Archie Meinerz Family Barbara Boerner Laurie Derus Catherine Hafemeister Judith Hansen James & Leigh Peterson Family Cheryl Kehrmeyer Kathryn Keppel Susan Kirsch Gwen Lafond Janice Mc Dermott Sharon Moore Robin Munger Luann Namowicz Jacqueline Podewils Susan Pohlhammer Linda Preston Elizabeth Scopp Annette Stockhausen Lynn Thornhill Tony Wittmann Marjorie Wresic Norman Peterson Marilyn Peterson Jeffrey Schmidt Judith Haeselich Dorothy Schmidt Patricia Schneider Walter Schneider Ronald Schwalbe Kaye Schwalbe Daniel Sherman Jessica Corbin Billie Sowaske
Dina Goode Joseph Goode Arlene Starck Torrey Levenhagen Raymond Steldt Tariq Akmut Grace Czarnecki Cynthia Dumke Susan Miller Karen Scharrer-Erickson Richard Wiese David Streicher Richard Henske Sharann Schoppe Jeanne Streicher Stuart Stultz Dennis Devoy Mary Sykes Catherine Banner Lawrence Thielen Marita Prendergast Alex Thien Marjorie Thien Derek Van Eck Jan Van Eck William Weihmeir Bruce Creen Jane Creen Mary Weihmeir Henry Zelinski Carol Zelinski Delbert Zunk Martin Lukes LIVING TRIBUTES Douglas Anschuetz Sylvia Meltzer Dean Arcand Maria Mamoser Sharon Baur Phyllis Gardner Carol Henderson Incourage Community Foundation Nancy Brower Joan Brower Phil Brower Brian Carless Denise Webb Patricia Cobb Carol Roberts Michael Del Ponte James Vojtik William Dreckmann Doreen Constable Tom Constable Joe Datka Margaret Driessen Donald Beard James Eutizzi
Brian Krueger Linda Fewell Judith Schmitz Bryan Friebel Barbara Moore Beth Fryk Jason Purdy Ted Haakonson Sandra Mendelsohn Linda Leicht Michael Huzzar Scott Leranth Beth Junge Cheryl Mueller Lou Helen Kirschling Kip Nelson Daniel Uehling Wendy Rauwerdink Kimberly Schmidt Judith Schlinder Kelli Stuckart Jeffrey Stewart Nicole Drummond David Streicher Victoria Gunderson Doug Turley Katherine Bellgrau Rebecca Turley DONATIONS Badger Meter Inc. Dr. Paul Barkhaus Boelter’s BowTies For A Cause Timothy Brennan Mary Brennan-Druml David Brueggemann Camp Esmeralda Terrence Canning Thomas Doucette Colleen Dougherty John Evans Freda Fowlkes-Bell Fr. Dan Farley Walk Allan Froehlich Patricia Gerber Hayward High School Jewish Community Foundation Debra Johnson Joan Kossel James R. Lloyd James Mader Kenneth Marien Susan McCann Jon McMurtrie Mike Boesch Memorial Mississippi Valley Mayhem NJMS Home & School Association
Brian Myles Patricia Osol Ozaukee County Chapter Of Thrivent Financial Mary Powers Mary Reale Marie Reynolds Patrick Ruel Eddy Sadowsky Claire Shaffer Ron Spitz Nancy Sullivan The Bon Ton Stores Foundation Julie Thomas Cynthia Tomich Kenneth Vogel West Allis Veterinary Clinic West Bend Mutual Insurance Company Nancy Zabriskier BRIAN TRINASTIC MEMORIAL GRANT PROGRAM Roger Beers Santa Maria Nursing Home Christopher Gallun Kathleen Abrahamson Suzanne Alberti Steven Alioto Auer Steel Dennis Beauchene Charles Bequeaith Thomas Betters Sarah Bevington James Burton Joan Chaneske Charles Compton James Curtes Robert Deboth Francis Disney Ellen Edge James Eldridge Stacy Fetherston Cherie Frey Marilyn Froze Robert Fulton John Gallun Barbara Gallun Patty Giuffre Mike Haberlein Thomas Herman Kurt Heyrman Daniel Heyrman Donald Heyrman Paula Kalke-English Cyril Klister Richard Lowery
The Mannebach Family Joseph McCaffery Nancy McLaughlin Mary McNamee Cynthia Meister T. Menge Shaun Mulholland Fredrick Neumaier Ted Proite Frank Romano Thomas Roth Rich Schulte Martha Straub Kathleen Surges Natalie Udvare Tom Uttke Patrick W. Walsh Jeff Walters Whittier School Joseph Witmer Lorraine Hanson Donald Hanson Scott Herman Carl Becker B. Brewer Country Hatters Sheldon Everson Aldoris Everson Sarah Ferrington Jeanne Goody Willard Halverson Donald Hanson Cheryl Hemker Saundra Holthaus Tia Hrudka Judith Kibler Edmund Knudtson Peggy Larson Judy Lasko William Laxton Annette Lucas Ronald Martinmaki James Mau Carole Plenge Allan Schlaver Connie Soppa Colette Suchla-Doyle B. Jean Troyanek Connie Troyanek Mary Zabel Harry Horner Dr. Barbara Horner-Ibler John Horner-Ibler Larry Leranth Doug Perdue Brian Trinastic Sandra Trinastic Rodney Woznicki Michael Dix Donna Kadlec
Diana Petre Kelly Rank Robert Summerfield Jeanine Traxel John Ustruck Bruce Wachholz Julie Wetzel Rick Woznicki Steven Woznicki
NOTE: These donations were recorded from December 1, 2013 thru March 15, 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
Susan Allen
Pamela Karstens
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In MEMORIAMS
impact on the ones they’ve left behind.
Bruce Bahneman
Bruce Knaack
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Mary Bansemar
Victoria Leigh
MEMORIAM In MEMORIAMS ‘
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Catherine Beede
Dr. Mark Lochner
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Anne Birsching
Thomas McGinn
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Shirley Borchers
Phoebe Meyers
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Sheldon Brauer
Pat O’Gara
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MEMORIAMS In MEMORIAMS John Braun
Hugo Ramirez
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Victor Busalacchi
Carole Schepp
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Mary Cantrall
Ronald Schwalbe
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Keith Christman
Jola Schwinn
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MEMORIAM Kenneth Fulcer
Sharon Straube
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Kelly Giese
David Streicher
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Judy Hess
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Robert Zdeb
MS
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MS
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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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