WINTER 2015 A SEASON OF HOPE

Issue 8

INSIDE:New ALS Therapy 8 / Sharon Baur’s Story 15 / Milwaukee Walk/Run To Defeat ALS 20 / Steve Gleason Act 32

Hope Is The Only ThingJOHN JAECKEL’S STORYPAGE 24

It’s TimeWe 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 IT’S TOO OUTDATED.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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ALS — An Overview, It’s Time 02

Table Of Contents 03

Board Of Directors/Staff Listing 04

Letter From Director 05

Upcoming Events 06

Research Updates 08

Care Services Update 14

Support Groups & Meetings 16

Cover Story 24

In Our Community 38

Contributions & Memorials 45

In Memoriams 46

WHERE TO FIND US:

alsawi.org

vsals.org

Facebook.com/ALSAWisconsin

Twitter.com/ALSAWisconsin

YouTube.com/ALSAWisconsin

Milwaukee Walk/RunPAGE 20

Steve Gleason ActPAGE 32

FEATURES

Table Of CONTENTS

HopeLine is published quarterly by The ALS Association Wisconsin Chapter 3333 North Mayfair Road, Suite 104, Wauwatosa, WI 53222P: 262.831.3993

Sharon Baur’s StoryPAGE 15

BOARD/STAFF

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

throughout Wisconsin. We are immensely

thankful for the time, talents and passion

each selflessly puts toward the cause.

BOARD OF DIRECTORSThomas KettlerKathryn A. KeppelJoanne BlaesingJohn SchleicherBenjamin BeckerHolly BlakeMary Brennan DrumlLaura HinrichsenMary Beth SchlechtRobb Slack

STAFFExecutive Director: Melanie Roach-BekosSpecial Events Manager: Susie ReedMarketing Coordinator: Natalie Jansky Director of Care Services: Lori Banker-HornerCare Services Coordinator: Robin StanczykCare Services Assistant: Janet GaugerCare Services Coordinator: Mary DeFrain-JonesCare Services Coordinator: Carolynne YounkCare Services Coordinator: Diane Fergot

LEADERSHIP TEAM

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Leslie BarbiScott BucherColleen DoughertyCurt DownesMary DrumlAllison EbertShannon EganJim EutizziDave HannekenBrad Hicks

Rachel KoebelCandace LesakJoe LewisMeg McKenzie PalenAlison MurphyDan O’DonnellSigne RednerMichael Reed Tim WendlerTeddi Zeman

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Executive Director: Melanie Roach-Bekos

D

ear Friends,

Welcome to the Holiday/Birkebeiner issue. We celebrate John Jaeckel for being our cover story and thank him and his wife, Deanna, for leading the charge on this first-time event and partnership.

Thank you to the ALS families, friends and PALS who stepped up to take the 2015 ALS Ice Bucket Challenge. The awareness of #EveryAugustUntilACure keeps our fight against ALS in the forefront. Any monies that were raised during the 2015 Challenge will be allotted as follows: half of the funds will be allocated to ALS research, while the other 50% will stay in Wisconsin to assist local ALS patients and their families through the Brian Trinastic Grant program, Equipment Loan Program and the ALS Certified Clinic at Froedtert Hospital. More information about these programs can be found on our website at alsawi.org.

I wish to extend a huge thank you to the sponsors, attendees and volunteers who supported the Appleton, Platteville and Milwaukee Walks to Defeat ALS—and especially the Chairpersons of these events: the Weber, Driessen, Spranger and Esqueda families (Appleton Walk); Jodi Pluemer,

Marie Kratchovill and Janet Hottenstein (Platteville Walk); and Chris Stich (Milwaukee Walk/Run), who led us on the Third Annual Run in Milwaukee. We saw record-breaking numbers at each of these events. All proceeds from the Wisconsin Walks/Run stay in Wisconsin and support Care Services, the ALS Clinics at Froedtert and the VA Hospitals, our Equipment Loan Program and the Brian Trinastic Grant program, as well as costs related to public awareness, communications, operations and advocacy efforts. As important as the funds raised by the events is the sense of community they create for ALS patients and their loved ones.

Looking forward to the upcoming year, the 2016 Evening Of Hope is scheduled for Saturday, March 19. As you may know, ALS research has long been severely limited by funding shortages. Thankfully, with the Ice Bucket Challenge and your continued support/attendance at the Evening Of Hope, we’ll continue to change this landscape. Scientific efforts that were never imaginable are now possible. It is my commitment to keep you informed on the progress that’s being made. Please continue to read HopeLine for updates.

And please note that we will have a series of fundraising events for 2016. Each event appeals to a different audience and offers its own unique sponsorship opportunities. We hope you’ll consider joining us in the fight against ALS.

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

Peace,

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2016 ALSA-WI EVENTS

Evening Of HopeSaturday, March 19, 2016Hyatt Regency Milwaukee Natalie Jansky: natalie@alsawi.org / 414.831.3993

Toast To HopeSaturday, April 9, 2016Hal’s Harley-Davidson, New BerlinNatalie Jansky: natalie@alsawi.org / 414.831.3993

Stickin’ It To ALSFriday, April 15, 2016 Bradley Center, MilwaukeeNatalie Jansky: natalie@alsawi.org / 414.831.3993

ALS Care & Research SymposiumSaturday, April 30, 2016 Sheraton Milwaukee Brookfield HotelJanet Gauger: janet@alsawi.org / 262.784.5257

Janesville Walk To Defeat ALSSaturday, May 14, 2016Lions Beach ParkNatalie Jansky: natalie@alsawi.org / 414.831.3993

Appleton Walk To Defeat ALSSaturday, September 17, 2016Appleton Memorial ParkNatalie Jansky: natalie@alsawi.org / 414.831.3993

Platteville Walk To Defeat ALSSaturday, September 24, 2016Mound View ParkNatalie Jansky: natalie@alsawi.org / 414.831.3993

Milwaukee Walk To Defeat ALSSunday, October 9, 2016Greenfield ParkNatalie Jansky: natalie@alsawi.org / 414.831.3993

2016 COMMUNITY EVENTS

Banding TogetherSaturday, March 5, 2016Eclipse Center, BeloitTerry Russell: terry.russell@cciwi.com / 608.207.0136

Rockin’ For A CureSaturday, April 23, 2016 Sheraton Madison HotelMike Anello: manello@mcw.edu / 414.955.2802

Koebel OpenSaturday, June 4, 2016 Meadowbrook Country ClubRachel Koebel: rachelt00@yahoo.com / 414.688.5338

Upcoming EVENTS

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WASHINGTON, D.C. (AUGUST 26, 2015) — In today’s issue of Nature, two new studies funded in part by The ALS Association both highlight an important new discovery around the C9orf72 mutation, the most common genetic defect associated with amyotrophic lateral sclerosis (ALS). Both studies emphasize that a key driver of the development of ALS due to this mutation is an export-import imbalance between the cell’s nucleus and its non-nuclear portion, or cytoplasm.

New ALS Therapy Target Highlights Role of RNA Processing(excerpted from ALSA.org)

ALS 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. For unknown reasons, veterans are twice as likely to develop ALS as the general population. There is no cure, and only one drug approved by the U.S. Food and Drug Administration (FDA) modestly extends survival.

“These new studies help us further understand a significant pathway in the ALS disease process and strengthens the evidence that RNA mishandling is a major contributor to ALS even beyond the genetic cases of ALS believed to be caused by the C9orf72 mutation,” said Lucie Bruijn, Ph.D., M.B.A., and Chief Scientist for the Association. “Importantly, this discovery may provide us with strong candidates for future drug

development,” she continued.

In the First Study, scientists have discovered that one major consequence of the C9orf72 gene mutation is disruption of RNA export from the cell nucleus. Working in fruit flies carrying various forms of the mutation, the researchers discovered 18 genes that worked to either worsen or mitigate the effects of the mutation. All 18 encoded either components of the nuclear pore or other proteins involved in regulating traffic of RNA and proteins in and out of the cell nucleus. One consequence was an increase in the amount of RNA retained in the nucleus, a change that was also seen in cells derived from people with disease due to the C9orf72 mutation.

The work was performed by first authors Brian Freibaum, Ph.D., of St. Jude’s Children’s Research Hospital in Memphis, Tennessee, and Yubing Lu, Ph.D., of University of Massachusetts Medical Center

Research UPDATES

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in Worcester; and led by J. Paul Taylor, M.D., Ph.D., of St. Jude’s, and Fen-Biao Gao, Ph.D. of University of Massachusetts. Dr. Gao was supported by The ALS Association’s Greater Chicago Chapter State of Illinois Grant.

“C9orf72 mutations are by far the most common genetic defect associated with both ALS and FTD [frontotemporal dementia], so understanding how the mutation causes disease is tremendously important for efforts to develop therapies to stop or reverse the death of neurons in the brain and spinal cord of patients,” said co-corresponding author Dr. Taylor.

In the Second Study, researchers at Johns Hopkins University showed that the expanded RNA of the C9orf72 mutation interacts directly with a protein called RanGAP1, which controls traffic of materials across the membrane separating the nucleus from the cytoplasm in all cells, including the motor neurons affected in ALS. That interaction appears to interrupt the normal regulation of cross-membrane flow of materials. The trafficking defect was seen in both a fly model of the disease and in cells from people with ALS. The defect could be mitigated with treatments that targeted the extra RNA produced by the mutation.

The work was performed by co-first authors Ke Zhang, Ph.D., a recipient of the Milton Safenowitz Post-Doctoral in 2014, and Christopher Donnelly, Ph.D., and senior authors and Association-supported scientists Rita Sattler, Ph.D., Thomas Lloyd, M.D., Ph.D., and Jeffrey Rothstein, M.D., Ph.D., all of Johns Hopkins University in Baltimore, Maryland. Dr. Ke Zhang was supported by Greater Philadelphia Chapter of The ALS Association.

“These exciting results focus our attention more strongly on the role of cross-membrane trafficking in understanding how the C9orf72 gene causes ALS,” according to Lucie Bruijn, Ph.D., M.B.A., Chief Scientist for The ALS Association. “The ability of experimental treatments to reverse these effects in this model also gives us more reason to hope that a similar approach may offer benefits in people with ALS. This study and the recent report by a second group also showing defects in nuclear transport provide a stronger basis for developing therapy to target this important pathway.”

As referenced above, Dr. Donnelly is a recipient of The ALS Association’s Milton Safenowitz Post-Doctoral Fellowships for ALS Research, which encourages and facilitates promising young scientists to enter the ALS field. Funding for this two-year research award is made possible by the generosity of the Safenowitz family through the Greater New York Chapter of The ALS Association and is in memory of Mr. Safenowitz, who died of ALS in 1998.

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

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CUSTOM TECHNOLOGIES HELP SAILOR WITH ALSRETURN TO THE WATER

He Sailed on His Own for about Four Hours near the Sheboygan HarborBy Rick Barrett of the Milwaukee Journal Sentinel | http://tinyurl.com/nnnl7hv

Steve Heronemus returned to sailing Friday, a decade after he was diagnosed with Lou Gehrig’s disease, which has left him physically disabled but has not lessened his desire to spend time on Lake Michigan.

The 55-year-old Sheboygan man has use of one finger and his jaw, which is enough to control a 24-foot sailboat that has been outfitted with electronic controls and a power winch for the sails.

On Friday, Heronemus sailed on his own for about four hours near the Sheboygan harbor.

Heronemus used a “bite tube” in his mouth to activate electronics that steered the boat left and right. He used his middle finger to activate buttons that trimmed the sails.

The journey was a major personal accomplishment and a huge step forward in sailing technology for others with physical disabilities.

Lou Gehrig’s disease is the common name for amyotrophic lateral sclerosis, or ALS, a disorder that affects nerve cells in the brain and spinal cord. Over time, the progressive degenerative disease can result in the inability to speak, move and breathe without mechanical assistance.

Heronemus uses his eyes to operate a computer, his main form of communication.

“Everything worked perfectly, and we had a beautiful ride,” he said after Friday’s sailing experience.

“We want to get a little more experience and then start spreading the news to get more people this opportunity. This sense of freedom is so different than our normal day-to-day experience. It is magical,” he said.

Heronemus planned to sail from Sheboygan to Whistling Straits golf course and back. Heavy fog resulted in that trip being scaled back, but he was still able to master the controls and sail for hours closer to the harbor.

“This trip is an affirmation that I am living with ALS and not dying of it. The bigger picture, though, is that we are testing technologies that can change the lives of people of any age, with any level of disability.”

“Sailing can develop self-confidence, purpose and community for people who too often feel worthless and isolated,” Heronemus said. “I’d like to continually challenge myself with longer trips and connect with other sailors living with disabilities. There are 55 million people living with disabilities in the USA, representing the largest minority group in the country. Our purpose is to refine and share our experiences to expand adaptive sailing opportunities in Sheboygan and throughout the country.”

Hundreds of hours of work went into setting up the controls, including engineering from Harken Inc., a Pewaukee sailing equipment manufacturer that supplies gear for the America’s Cup and other major sailing races.

The Sailing Education Association of Sheboygan, SEAS, managed the project, collaborating with Harken and others, including Bemis Manufacturing Co. of Sheboygan Falls.

“When SEAS pitched the project to us, I said, ‘Yeah, I think we can help out... we could come up with some systems so that many disabled people can sail,’” said Steve Orlebeke, Harken’s engineering manager.

It was a challenge to create a handcrafted chair that was built for the trip, including the head rest and neck support, the bite switch and various electronics synchronized to control the boat.

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The system was still being tweaked, right up until the time the boat was launched Friday morning from the Sheboygan Yacht Club. Heronemus was anxious to get on the water.

“As soon as we got away from the dock, he never gave up the controls. He was able to take a couple of people sailing with him, too. His dad got in the boat with him for about 20 minutes, and that was pretty cool. Most of the time he spent sailing by himself,” said Rich Reichelsdorfer, director of SEAS’ adaptive sailing program. “Everybody’s pretty happy today. That’s for sure.”

Steering a sailboat back and forth across the wind can be a challenge for anyone. Still, the preparation time paid off and will likely lead to further advancements in adaptive sailing.

“This program is in its beginning steps. We have a lot more work to do ... but

we dove into the deep end of it, so to speak. We have proven that we have the technology to get a quadriplegic out sailing by himself or to sail with some friends,” Reichelsdorfer said.

Some of the advancements could include wireless controls such as Bluetooth®. The systems could be modified based on the specific needs of the operator.

“The trick is to build something universal that can easily be adapted to whatever disability a person has. If we can make it 80% to 90% perfect for people, we will be doing OK. The idea is to get people with disabilities out sailing,” Reichelsdorfer said.

“We can do this, but we need people like Steve Heronemus to inspire us and coach us,” said Tryg Jacobson, a SEAS board member and project coordinator. “We will be promoting this program regionally and nationally to attract ALS, quadriplegic and paraplegic sailors.”

SEAS has eight boats that were training vessels for Olympic racing. More recently the boats have been used in the adaptive sailing program for blind sailors.

Last year, Sheboygan was host to a world championship race for blind sailors. In that sport, competitors rely on sound and physical feedback from the boat to navigate a course.

“This was the first world championship where there wasn’t a sighted person on the boat. That really got everybody excited to build our disabled sailing program,” Reichelsdorfer said.

This is a return to sailing for Heronemus, who as a teenager sailed with his father, Richard Heronemus, on Long Lake and Lake Michigan.

“I love how sailing challenged me, and at the same time it brought a sense of freedom, peace and serenity,” Steve Heronemus said.

He added: “Anyone else who wants to sail like this should ensure they connect with people like those at SEAS, who are passionate about sailing, safety and helping others. This is not a do-it-yourself project, but I encourage all with an interest to give it a try. I have been so honored to work with this wonderful group of people.”

“We can do this, but we need people like Steve Heronemus to inspire us

and coach us... ”

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DEAR CHAPTER MEMBERS,

As I sat down to write my column, it was hard to focus on one topic due to everything that is happening in the ALS community and the Chapter. As I reflected on all that has occurred over this past year and continues to happen, it seemed very appropriate to make the theme of my column one of thanks, particularly given the holiday season. In the midst of the challenges we’ve seen, there are so many things to be especially thankful for.

I would like to start by wishing each one of you in a caregiving role Happy National Family Caregivers Month. November is just a single month when we honor these special people and the care they provide each and every day. Caregiving is a task that can be both emotionally and physically challenging, yet it’s also a cherished role. Caregivers themselves, whether they are spouses, adult children, parents or even younger children, should also be cared for and recognized. I’m thankful for each and every one of you. For all that you do, we honor you during your special month—and appreciate you always.

I am thankful for all our Chapter members who have stepped up when asked to help advocate for change in legislation, both locally and nationally. The change in the Medicare determination for Speech Generating Devices and the passing of the Steve Gleason Act (please see more detailed information in this issue) were the result of the ALS community stepping forward together. This couldn’t have been accomplished without your involvement.

I’m thankful for our ALS clinic teams in Wisconsin. We’re very blessed to have individuals who are dedicated to ALS. Thank you to Dr. Paul Barkhaus and his clinic teams at Froedtert/Medical College of Wisconsin and the Milwaukee VA. Thank you to Dr. Michael Leone and his team at Gundersen Health System in La Crosse, as well as our partners with the ALS Clinic at UW Hospital in Madison. Thank you for all that you do to support our Chapter members and families.

I’m thankful for all our volunteers who we could not do without. We thrive and are able to do what we do because of YOU.

I’m thankful for our partners at NuMotion in Oak Creek, Eau Claire and Appleton, who work so hard in assisting us in our Equipment Loan Program. They provide such a valuable in-kind donation of

Director of Care Services:Lori Banker-Horner

Care Services Team

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time, storage, pick-up and delivery. They allow us to reach more individuals in Wisconsin than we could ever possibly do without their help.

I’m thankful for our partners at the ALS Northwest Support Group in Chippewa Falls. They’re an amazing group serving the Eau Claire and surrounding areas. You are all true partners and we value our close relationship and common goal in serving our ALS families.

I’m thankful for all the researchers who are dedicated to finding a treatment and a cure for ALS. This is an exciting and hopeful time following the financial windfall of last year’s Ice Bucket phenomenon, which made much of this research possible. I was in awe in an August meeting I attended with the National ALS Association, where the focus was on how to plan for a time when there’s a treatment for ALS and how that will change the services we provide our members. It truly was an amazing feeling to be realistically planning for that day.

Finally, I’m thankful for all of you who are living with ALS, and for your families and caregivers. Every single day we see enormous strength in the face of amazing challenges. The love and dedication displayed by your families is unmatched. Thank you for the opportunity to serve you.

I wish you all a very warm and loving holiday season filled with HOPE.

Care Services UPDATE

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HAPPY HOLIDAYS FROM THE CHAPTER SUPPORT GROUPS AND CLINIC TEAMS! WISHING YOU ALL A VERY WARM AND LOVING HOLIDAY SEASON!

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The following article was written by Sharon Baur, a special Chapter member from Wisconsin Rapids. She and her husband, Pastor Martin Baur, are regular members of the Central Wisconsin Support Group. They are a wonderful team and a support to others who are living with ALS. Thank you, Sharon, for sharing these wonderful thoughts and pictures…

“I might have been given a bad break, but I’ve got an awful lot to live for.” — Lou Gehrig

It has been 76 years since Lou Gehrig gave his “Luckiest Man” speech before a stadium full of fans, after being diagnosed with amyotrophic lateral sclerosis. His words have been unforgettable, and his farewell endures as the most iconic speech in sports history. He was 36 years old and dying, yet he called himself “the luckiest man on the face of the earth.”

Until three years ago, I, too, would have wondered how someone facing a terminal illness with no known cause, no treatment and no cure could see himself as the “luckiest man.” But on October 5, 2012, I heard the same three words that Lou did back in 1939: “You have ALS.” Words that would change the direction of my life forever and, as with Lou, they came from a neurologist at Mayo Clinic.

The outcome of a diagnosis of ALS today isn’t much different than it was in 1939. The average life expectancy is two to five years. Lou died less than two years after his diagnosis, yet he expressed optimism and gratitude at Yankee Stadium that day.

No doubt you’ve heard the expression, “Is the glass half empty or half full?” I have a few friends who chuckle at my response to that question. I guess in theory the way a person answers is supposed to give insight into their personality; traditionally, the optimist sees the glass as half full while the pessimist sees it as half empty. From my perspective, the obvious and only answer is, “It’s both!” But I guess I’ve always had a realistic view and approach to most things I see and do. I’ve always perceived life as having its ups and downs and believe in taking the good with the bad and everything in between. This outlook seems to have served me well throughout my life, but has especially helped me through my daily walk with ALS.

The steady and relentless loss of my physical capabilities is a constant reminder that my body is dying and I can’t do anything about it; the glass “half empty” kind of thing. But we adapt and cope as each stage presents itself and we take each day for what it is... another day that I view as half empty AND half full! I see myself as having lived a full and blessed life with just a few bumps and bruises along the way. God has been good. And since my diagnosis, I see myself as having been given the gift of time. Three years ago, I didn’t know if I’d live long enough to see any of my future grandchildren. Today, I’ve not only had the blessing of holding our first grandchild, Paityn, but also her baby brother, Brayden, born three weeks ago! And as if that isn’t enough of the glass “half full” kind of stuff, I’m looking forward to meeting a third grandbaby who’s due in March!

So yeah, I get it Lou... I understand what you meant. This disease cannot rob me of all the blessings and love I’ve enjoyed throughout my life. Sure, I might have been given a bad break, but today I too consider myself one of the luckiest people on the face of the earth.

~ Sharon Baur

SHARON BAUR’S Story

Support Groups & MEETINGS

*WISCONSIN ALSA CHAPTER SPONSOREDProvides support for people with ALS, their families, friends and caregivers.

*Milwaukee ALS Support GroupDate: Second Saturday of each monthTime: 11:00 am to 1:00 pmPlace: Froedtert HospitalConference Room NT 2209Address: 9200 West Wisconsin AvenueMilwaukee, WisconsinUse 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 mary@alsawi.org

*Milwaukee ALS Caregivers Support GroupDate: Fourth Thursday of each monthTime: 7:00 pmPlace: Locations vary—locations are available at alsawi.orgThis 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 robin@alsawi.org

*Fox Valley ALS Support GroupDate: Third Tuesday of each monthTime: 6:30 pm to 8:00 pmPlace: All Saints Lutheran ChurchAddress: 1072 Honey Creek RoadOshkosh, WisconsinOne mile west of Highway 41Contact: Diane Fergot at 920.279.4449 or email diane@alsawi.org

*Central Wisconsin ALS Support GroupDate: Second Monday of each monthTime: 6:00 pm to 7:30 pmPlace: St. Luke’s ChurchAddress: 2011 10th Street SouthWisconsin Rapids, WisconsinContact: Deb Roberts at 715.886.5860 or email vegtales@wctc.net

*La Crosse Area ALS Support GroupDate: Second Saturday of each monthTime: 10:30 am to 12:30 pmPlace: Gundersen Lutheran HospitalPatient Education Room—1st Floor Main Clinic BuildingAddress: 1900 South AvenueLa Crosse, WisconsinContact: Connie Troyanek at 608.788.0670 or email cltroyanek@gmail.com

*Northeast Wisconsin ALS Support GroupDate: Second Wednesday of each monthTime: 6:00 pm to 8:00 pmPlace: Options for Independent LivingAddress: 555 Country Club RoadGreen Bay, WisconsinContact: Carolynne Younk at 920.288.7095 or email cyounk@alsawi.org

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ADDITIONAL SUPPORT GROUPS & MEETINGS

Northwestern Wisconsin (Chippewa Falls) ALS Support GroupDate: Second Thursday of each monthTime: 1:00 pm to 3:00 pmPlace: Chippewa Valley Bible ChurchAddress: 531 East South AvenueChippewa Falls, WisconsinProviding support for people with neurological diseases, families, friends and caregivers.Contact: Julie Chamberlain, LPN, at 715.271.7257 or email alsnwwi@gmail.com

Rockford Area ALS Support GroupDate: Fourth Saturday of each monthTime: 12:00 noon to 2:30 pmPlace: OSF St. Anthony Medical CenterAddress: 5666 East State StreetRockford, IllinoisContact: Tony Cook at 312.257.5434

Milwaukee Ventilator Users Support GroupDate: First Tuesday of each monthTime: 6:30 pm to 8:00 pmPlace: St. Mary Hill Hospital, Long Term Respiratory UnitAddress: 2323 North Lake DriveMilwaukee, WisconsinProvides support for people on ventilators, their families, friends and caregivers in the Milwaukee area.Contact: 414.352.2185 or 414.963.9686

Milwaukee MDA Support GroupDate: Third Monday of each monthTime: 7:00 pm to 9:00 pmPlace: Froedtert Hospital Conference Rooms A and BAddress: 9200 West Wisconsin AvenueMilwaukee, WisconsinProvides support for people with neurological diseases, their families, friends and caregivers in Southeastern Wisconsin.Contact: 414.453.7600

Madison MDA/ALS Support GroupDate: Second Tuesday of each month Time: 12:30 pm to 2:00 pmPlace: Dean ClinicAddress: 700 S. Park StreetMadison, WisconsinGroup meets in Deli Room 1, next to Fit N Fresh, on the Lower LevelContact: Mary at 608.222.3269

Duluth-Superior Area ALS Support GroupDate: Fourth Tuesday of each monthTime: 1:00 pm to 2:30 pmPlace: First Street Clinic (Aurora Room)Address: 420 East First StreetDuluth, MinnesotaThird floor parking ramp on First Street, west side of building; Skyway to building on second level.This group breaks into two groups (PALS and families/friends/caregivers) on a quarterly basis or as requested. Refreshments are served. Contact: For questions or to RSVP call 218.786.5399

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Support Groups & MEETINGS

THE FOLLOWING ARE THE MEETING LOCATIONS FOR OUR ALS CAREGIVER DINNER OUTINGS. This is a special group for all individuals who currently are or have been in a caregiving role for a loved one, family member or friend with ALS. It is a chance to share with others, give and receive support and find out good information and tips in a very relaxed environment.

We are looking forward to seeing you!

To RSVP for the dinner outing or for more information please contact:

Milwaukee/Southeast WisconsinRobin Stanczyk 262.402.8148 robin@alsawi.org

Fox Valley/Northeast WisconsinDiane Fergot 920.279.4449 diane@alsawi.org

MILWAUKEE/SOUTHEAST WISCONSINThe group meets the fourth Thursday of the month at 7 pm

Thursday, January 28, 2016BRAVO! Cucina Italiana Brookfield Square95 North Moorland RoadBrookfield, WI262.785.0858

Thursday, February 25, 2016Quaker Steak & Lube4900 South Moorland RoadNew Berlin, WI262.754.9090

Thursday, March 24, 2016Radisson Milwaukee WestJimmy’s Restaurant 2303 North Mayfair RoadWauwatosa, WI414.257.3400

FOX VALLEY/NORTHEAST WISCONSINThe group meets on Wednesday, February 3, 2016, at 6 pm

Good Company Restaurant110 North Richmond StreetAppleton, Wisconsin

NOTE: There will be no Caregiver Dinner Outing in December.

ALS Caregiver DinnerGROUP MEETING LOCATIONS

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In one statement, this young person captured what it is like to not only have a parent with ALS but also to be intricately involved with her care. Despite the time spent taking care of her mom, many people don’t know what she does or how to support her because being a caregiver for your parent as a young child or teenager is not something many adults consider. But kids are very involved in the care for their parent or grandparent with ALS, as evidenced by a recently completed pilot study of kids who are involved in the care of a family member with ALS in Wisconsin.

The results of this study showed that kids are involved in a variety of caregiving tasks, from feeding to lifting to simply making sure their family member is safe. While they often feel isolated from other kids and would love more support from school staff, what they expressed needing the most was knowing more about ALS, its progress and how best to talk to and help their family member.

These results highlight the need for more education around caregiving, ALS-specific information and dedicated support systems specifically targeting youth and children in the home. The results of this small study, sponsored by the National ALS Association, are being used to inform a national survey of families and ALS — something never before assessed in the ALS population. It asks persons with ALS (PALS) what it is like to have children in the home and whether they assist with caregiving. This national study will be used to raise awareness of family experiences, detail needs of families, children and youth caregivers and develop supports and national programs for families affected by ALS.

If you, or someone you know would like to be a part of the national study, contact als-young-caregivers@uwm.edu, or call Melinda Kavanaugh, Ph.D., LCSW at 414-229-4414.

Melinda Kavanaugh, PhD, LCSW is an Assistant Professor in the Helen Bader School of Social Welfare at the University of Wisconsin – Milwaukee. Dr. Kavanaugh has partnered with The ALS Association –Wisconsin Chapter and Dr. Paul Barkhaus, Medical Director with the ALS Association Certified Treatment Center of Excellence at Froedtert/Medical College of Wisconsin in her research on Young Caregivers.

She presented her work at the 2014 International ALS/MND Symposium in Brussels, Belgium, and will be again presenting at this year’s International Symposium in Orlando, Fla. Dr. Kavanaugh has worked for years with families affected by Huntington’s Disease and other neurological disorders. The ALS Association – Wisconsin Chapter is pleased to be working closely with Dr. Kavanaugh and values this strong collaborative partnership.

YOUNG CAREGIVER RESEARCH PROVIDES VALUABLE INSIGHTRESULTS IN NATIONAL SURVEYBy Melinda Kavanaugh, Ph.D., LCSW

“I like helping her… I do a lot, and it is hard, but I get to spend time with her, so it is ok. She is getting worse, so I know I will have to do more, which scares me, but I do it.”

2015 MILWAUKEE Walk/Run To DEFEAT ALSThanks to your efforts, we raised $485,000 for the Milwaukee Walk/Run To Defeat ALS! This was the most successful Walk/Run yet, and each and every dollar will make a major difference in the lives of Wisconsin ALS patients and their families. Because of you, we’re thousands of steps closer to a cure. Your team page will be up and running and accepting donations until December 31. Please help us get the word out and stick with us in this fight.

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Photos by Pam Ferderbar

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THANKS TO ALL FOR YOUR SUPPORT

AND DETERMINATION

TOGETHER WE WILL FINDTHE CAUSE/THE CURE/ THE TREATMENT

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John Jaeckel’s Story

for Team Jaeckel and al l those f ighting ALS

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By: John Jaeckel

Photos by Jeff Salzer | jeffsalzer.com

Hope

FearOnly Thing

is the

Stronger than

I n the summer of 2009, I was working

construction for a family friend. As a teacher, this was how I enjoyed spending my summers — earning a little extra money to support my cross-country skiing and road biking habits. I was never much of a relaxer, always moving and staying busy.

As I went to lift a plywood panel over my head, I sighed, “Ugh, I guess this is 50.”

The approach of fall was once again bittersweet for me. I enjoyed going back to school and coaching football, but I saw fall as the dying of everything before a long cold

Wisconsin winter. The football season was off to a great start. This was our year, with a group of kids who still had the taste of our late season playoff loss from the previous year.

As the September 18th game kicked off, my head began to hurt. After the first quarter, it pounded. By halftime, it was throbbing. I made it through the game, went home, and when the pain became unbearable, my wife took me to the ER. I rode a Life Flight to Abbott Northwestern Hospital in the Twin Cities, where I was diagnosed with a subarachnoid hemorrhage — more commonly known as a brain bleed. I spent 10 days in the ICU and was able to walk away. I struggled with depression throughout the winter and was unable to ski, which made the winter long, but I made it.

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In March, we went to Mexico and I was happy that spring was approaching. I had made it through my close call in life. I was so lucky and truly blessed. We had learned our lesson; life is too short.

However, I wasn’t as active as I typically was and my muscles were deteriorating, which

seemed odd. The pictures from Mexico were proof that in four months the change was drastic. As a lifetime athlete with a degree in exercise science, it didn’t seem right. Is this really what life after 50 is like?

On July 21, 2010, I went to Duluth, Minn., to see a specialist. He suggested an EMG test. Anyone who’s had one knows they’re not fun. It’s painful to lay there worrying what they’ll find. As he entered the room with the results, he lowered his voice and struggled to maintain eye contact. “I recommend that you get a second opinion,” he started. “Have you heard about ALS?” My world began to spin and I felt nauseous. How could I tell my family?

He gave me the basic information and told me to be cautious while researching online, as it could be misleading in regard to treatments. I remember bits and pieces: 30,000 Americans. 2 to 5 year life expectancy. Everyone progresses differently. Terminal. No cause. No cure. No hope.

After a long hour and a half drive home, I sat in front of my wife and 20-year-old daughter and shared the news. We frantically called around for a second opinion. This doctor had to be wrong. This was not fair — we had already had our close call and we survived it.

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I turned to my faith and found comfort in seeing all the blessings in my life and believing that everything happens for a reason.

We scheduled a second opinion, and on Friday, August 13 (imagine that), at Henneipin County Medical Facility in Minneapolis, our deepest fear was confirmed. We were told to “get our things in order” and enjoy life as much as we could.

My daughter, Sara, and I were ready to spend the rest of my time crying on the couch and eating Doritos. But my wife, Deanna, who has always possessed a positive, go get ‘em attitude, said something that would change the rest of our lives. She stood in frustration in our living room, firmed her voice, pointed her finger and said, “We

will NOT waste today worrying about tomorrow.”

The month of August was a blur. I had to decide if I would return to teaching and coaching. While it was my calling and I was good at it, was this how I wanted to spend

my last day, week, month or year? Sara went back to college. Deanna returned to work and spent her days dodging the dreaded (and always whispered) “So I heard about John…” But there were a few people who offered a different message. They mentioned Karen Hurd, a woman in Hayward, Wis., who

had helped several people with terminal illnesses by putting them on an unusual bean-based diet. Deanna emailed her: “I know you probably can’t help us, but we just wanted to check if you might be able to?” Karen responded, “Yes I can.”

Her diet was tough. But she was extremely confident and ALWAYS had an answer for our questions. I agreed to try one month. Only beans, lean protein, vegetables, nuts and water. Coming from a pasta, bread and cheese family, let me tell you the first batch of bean flour bread made us cringe. But I soon started to feel incredible, and even

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weaned myself off my blood pressure medicine. I decided to return to teaching and coaching.

Even though I felt great, my ALS started to progress — first in my arms and hands. I could still do everything by myself but couldn’t lift as much weight as I once did. Soon, however, I needed help buttoning my pants. This was the one that hit me hard. Maybe because it’s a private task or because it was something I

had taken for granted for 52 years. Of all the independence ALS has robbed me of, this is still the toughest for me to deal with.

My body slowing down, however, hasn’t been all bad. I’ve learned how to appreciate the little things and see the world in a way that was speeding by before. I began reading and understanding how powerful our mind truly is; that positive thinking and gratitude can help with healing. I turned to my faith and found comfort in seeing all the blessings in my life and believing that everything happens for a reason.

I also found peace in talking to other PALS and became involved with the great group from the Wisconsin ALS Association. They taught me that being an advocate is one of the most positive things I could do, not only for myself but for others. I had always found

personal value in helping others, but this helped me cope with my own diagnosis and journey in ways I never imagined.

I’ve lived a great life, filled with family, sports, motorcycles, cars, boats, hunting, fishing and a great career as a Special Education teacher and a coach. I’ve skied 17 American Birkebeiner races (think a marathon on cross country skis), run three marathons and 20 half-marathons, competed in countless other bicycle and ski races and canoed and sailed 1,300 miles on the Yukon. From the farm, to sports, and onto my recreational choices, I gave my body a run for its money. And even though I’ve been told some of the head injuries I’ve had could likely be the cause of my ALS, I wouldn’t change the life I’ve lived. It made me who I am today. It prepared me for the fight against ALS.

In July, I proudly celebrated the five-year anniversary of my diagnosis. After the dust had settled from that diagnosis, I refused to be content with the “no cause, no cure, no hope” mentality.

In fact, since being diagnosed, I have skydived and made traveling a priority. I’ve been to such places as Yellowstone, the Grand Canyon, Hawaii and Mexico. And in 2014, I walked my daughter down the beach at her Jamaican wedding.

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I’m blessed to have some new additions to my family in my son-in-law, Ryan, and grand dog, Samson. I have incredible friends who’ve stepped up in more ways and enriched my life even further than I could ever have imagined. And my wife of 27 years, who has been exceptional at dealing with me throughout all stages of my life, remains positive and continues to be a fighter. I am where I’m at in this journey because of her. She will never know how grateful I am for her.

In regard to a cure, I am aware that it’s a matter of time and funding. Unfortunately, for those of us currently living with ALS, our greatest fear is that we will not see this time. So it’s our duty to be advocates and supporters of fundraising events, and to do everything in our power to see a world without ALS — even if it means that is for our future brothers and sisters.

The ALS Association of Wisconsin has presented me with so many opportunities to be an advocate. We were blessed to attend an annual event in Washington, D.C. in May 2013 as the Wisconsin guests of honor. We spoke with our state representatives and made sure our voices were heard, as many of our PALS have been robbed of their ability to speak. We’ve attended the Brewers Chasin’ A Cure Tailgate Party, Toast For Hope, Evening of Hope and the Milwaukee Walk To Defeat ALS.

And 2016 brings a new partnership I’m very excited about. My wife, Deanna, was involved in creating a three-year partnership between the American Birkebiener and the ALS Association of Wisconsin. Being a former competitor of the Birkie Race, which is hosted in my hometown, I’m proud to be a part of such a great opportunity for advocacy and fundraising. Stay tuned on how you can be involved with us!

I proudly celebrated my 5 year anniversary since diagnosis in July. I have lived a great life, and I do not say that lightly.

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In the meantime, I control what I can, stick to my diet and try to keep a positive mindset. I can still walk, but stairs have become really challenging, and I need to rest more frequently as I walk. I use my walker for short trips and rely on someone pushing me in a wheelchair for longer trips. I still eat, breathe (I use a machine at night), swallow and speak independently. Each day that I get to wake up and fight is one day closer to a finding a cause and a cure. We may not always be able to choose the cards we have been dealt, but it is always our choice how we react to them. I must rely on hope, because that is something ALS cannot take from me unless I let it.

Hope is the only thing stronger than fear.

Everyone progresses differently. Terminal. No cause. No cure. No hope.

I REFUSED to be content with

the “no cause, no cure, no hope”

mentality.

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God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

One day at a time is how I have chosen to cope with my ALS.

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STEVE GLEASON ACT Signed into Law; Medicare Finalizes New SGD Coverage Policy In July 2015 the ALS community won tremendous victories in the fight to preserve access to speech-generating devices (SGDs) as the President signed the Steve Gleason Act into law and the Centers for Medicare and Medicaid Services (CMS) finalized a revised SGD coverage policy. These two developments will help ensure people with ALS have access to the SGDs they need, when and where they need them.

NATIONAL COVERAGE DETERMINATION (NCD) FOR SGDS:» Expands coverage for SGDs to include coverage not only for speech functionality, but also other communications such as the capability to generate email, text and phone messages. People can now access these vital communications tools. While email and text functions are permitted and covered, Medicare will not pay for phone or email service. However, people may access those services at their own expense.» Permits people with ALS to access, at their own expense, other non-speech functions such as the Internet, environmental controls and other SGD features.» Permits a person to “unlock” an SGD in order to access additional functions, regardless of whether they own or rent the device. This means that people who are currently renting SGDs can unlock their SGD to access additional functionality, at their own expense. » The NCD is effective July 29, 2015. The text of the NCD is available here: http://go.cms.gov/1KI0eQr.

THE STEVE GLEASON ACT:Eliminates the “capped rental” payment system to restore a person’s ability to purchase, rather than rent, an SGD. This is effective for SGDs furnished on or between October 1, 2015, and September 30, 2018.

» On October 1, all people with ALS will be able to purchase an SGD. Those renting an SGD prior to October 1 will be able to purchase their SGD on October 1 by paying the purchase price less any rental payments that already have been paid. Medicare continues to cover 80% of the cost as would have been the case if the SGD initially was purchased. » Due to the revised NCD, people who are renting devices are permitted to “unlock” them to access additional functionality, at their own expense. They do not have to wait until October 1, 2015. » People who purchase their SGD after October 1 are permitted to keep their SGD when they change settings and are admitted to a hospital, hospice or nursing facility. A person who is currently renting an SGD is unlikely to lose access to that SGD if they change settings in the month between now and October 1. This is because Medicare will generally stop the rental payment only if a person is admitted to a facility for an extended period of time, such as a month or longer. If a person with ALS loses access to an SGD during the remaining time capped rental is in effect, they should contact their local ALS Association chapter for assistance. » The legislation helps to ensure coverage for eye tracking technology by adding eye tracking to the definition of durable medical equipment, which is covered by Medicare. » The provision is effective January 1, 2016. However, the later effective date should not impact the ability of people to access eye tracking. This is because eye tracking has been provided to people with ALS while vendors appeal denied claims. If a person is denied access to eye tracking technology, they should contact their local ALS Association chapter for assistance.

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The 2015 Appleton Walk To Defeat ALS raised more than $170,000! Thanks to the 2,000 walkers and all those who donated to help all Wisconsin ALS patients. Also, we couldn’t have done it without the Weber family and friends, who worked all year to make this walk such a huge success.

2015 APPLETON Walk To DEFEAT ALS

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2015 PLATTEVILLE Walk To DEFEAT ALSThe 2015 Platteville Walk To Defeat ALS had a great turnout and raised $26,000 that will benefit Wisconsin ALS patients. The morning was filled with donuts, 60+ raffle prizes and an energy level that left every person feeling hopeful. Thank you to the organizers and all those who walked with us.

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The Second Annual Manitowoc Walk in honor of Bernette Seiler was a major success. It raised more than $25,000! Thank you to Bernette’s family and friends who continue to make such a difference in the lives of those living with ALS.

MANITOWOC WALK

In Our COMMUNITY

The Third Annual Wac “Chips In” event was every bit as fun as the new and returning golfers expected it to be. The organizer, Randy Foss, pulled off another successful outing and has turned the annual event into a must for golfers. Thank you to the “Chips In” team!

WAC CHIPS IN

On October 9 at the Marquette University High School vs. Brookfield East High School football game, both teams wore red and called it a “Red Out,” in honor of community members battling ALS. Friday night’s game was a contender in FOX6 News Milwaukee’s High School Blitz Game of the Week competition and it won, which meant the game was covered by FOX6’s Brandon Cruz. Thanks to these two teams for making a difference and for helping raise so much ALS awareness.

RED OUTFOOTBALL GAME

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Ice Cream RIDEDeb Heinzelmann and her family make each Ice Cream Ride for ALS better than the last. The event is in memory of Deb’s husband, “Big Ed.” While Deb and her kids were Ed’s first love, ice cream was his second. Thank you to Deb and her family and friends for making such a difference time and time again.

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For years, UPS has been an outstanding partner in the fight against ALS. Our UPS-ers are unbelievably dedicated to the cause and willing to help in any way, shape or form. They’re kind, generous, hard-working people, and we are lucky to have them by and on our side. A special thanks to Rocco, who helped form this partnership and has had an immense impact on our Chapter and those whom we serve.

Jan’s husband, Jeff Kaufman, was diagnosed with ALS in 1989. He battled the disease for an amazing 21 years. Before succumbing to it, he and Jan helped form the foundation of the Wisconsin Chapter and later founded Evening of Hope. Jan served as a Board Member and a member of the Evening of Hope committee and continues to fight for a cure in memory of Jeff and in honor of all ALS patients. Thank you for all you’ve done and continue to do, Jan.

THANK YOU UPS

THANK YOU

JAN

Sally and Jim got married September 5, 2015. Instead of wedding gifts, the couple asked their friends and family to donate to our Chapter instead. Both have lost loved ones to ALS and continue to fight for a cure. Thank you, Sally and Jim, and congratulations!

THANK YOU

Sally Schoepke Jim Griffin

If you’re planning on shopping at Amazon.com for the holidays, please consider doing it through AmazonSmile. When you designate our Chapter as your charity, Amazon makes a charitable contribution on your behalf—at no cost to you.

Tens of millions of Amazon items are eligible and are notated as “Eligible for AmazonSmile donation.” Your same account, Wish Lists and other Amazon.com settings will be the same. You just log into Smile.Amazon.com (instead of Amazon.com) and search for “ALS Association Wisconsin Chapter,” then set us as your charity.

The site makes it simple to do, and there’s no simpler way to help raise funds for Wisconsin patients and families living with ALS.

More information can be found here: http://tinyurl.com/paw3elw

AMAZONSMILE

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BOESCHBOWLINGMike Boesch battled ALS for five long years, and during that time our Chapter fought alongside of him and his family. As a way to give back, Mike’s wife, Jane, and their kids created the Mike Boesch Memorial Softball Tournament with hopes that the money raised would aid in finding a cure. After 12 years of running the event, they switched it from softball to bowling. And the third Mike Boesch Memorial 9-Pin Bowling Tournament was one to remember. It was also the finale to their long-running annual tournaments. Many thanks to the Boesch Family and friends for their many years of support and ongoing dedication to finding a cure.

The Apple River Riders in Amery, Wis., ride in rain or shine to help those living with ALS. During the past five years, they’ve raised thousands of dollars to do just that. Thank you, Apple River Riders!

ALS POKER RUN

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WELCOMEDR. DOMINIC FEE

The Care Services Team would like to add a special note of thanks to all our wonderful volunteers. Whether there has been a need to help at a Care Services event, an office task or something as basic as stuffing envelopes for Care Services, your response has been tremendous. You give up your time on weekends, you show up at the crack of dawn at an event and you work tirelessly! We could not accomplish what we do or get important information to our chapter members without your help. There are too many of you to name and we wouldn’t want to leave a single person out, so we want you ALL to know how very much you’re appreciated!

The Care Services team would like to wish each and every one of you and your families a very happy and loving holiday season!

Lori, Janet, Mary, Diane, Carolynne and Robin

THANK YOU TO OUR WONDERFUL CARE SERVICES VOLUNTEERS!

STAFFING NEWS The ALS Association-Wisconsin Chapter welcomes David Ferrie to the newly-created position of Equipment Program Coordinator. Most recently, David has been the lead investigator for a downtown law firm, but he has many passions and interests. He is an actor who performs with local theatre companies and is a certified life coach. He has been a wine consultant/buyer on the retail and wholesale levels as well as an EMT.

David is excited to join our organization and focus his wide and varied experience on the needs of our members. David will be the main contact for all equipment loan and equipment donation requests as well as all aspects of the program. David’s sister-in-law, Margaret O’Donnell, had ALS and he remembers how much help and support she received from the Wisconsin Chapter. Welcome, David!

The ALS Association-Wisconsin Chapter is very pleased to announce that Dominic Fee, MD, is joining Dr. Barkhaus and The ALS Association Certified Treatment Center Team at Froedtert and the Medical College of Wisconsin. He is excited to be joining the ALS Clinic team and happy to be returning to Wisconsin. Dr. Fee completed medical school at the University of Iowa and did his neurology residency and neuromuscular fellowship at the University of Wisconsin at Madison. He also completed a neuro-genetics fellowship at Cedars Sinai in Los Angeles, Calif.

For the past 11 years, Dr. Fee has been a neuromuscular specialist at the University of Kentucky in Lexington, where he was the director of the neuromuscular lab. He worked directly with Dr. Edward Kasarskis, Director of the ALS Multidisciplinary Clinic at the University.

Dr. Fee and his wife, Dr. Karin Swartz, are happy to be joining the Medical College of Wisconsin and Froedtert Hospital Community. They are both happy to be back in Wisconsin closer to family. Welcome, Dr. Fee!

MEMORIALSRaymond BauerBessie BauerJoan FoleyMary StultzDan GiblinLinda RamseierJohn NordengrenCarol NordengrenMildred StetzerJoan Anderson Leroy Anderson Vivian Hayden Jeanette Hubbard Warren Wright Howard Dicke Warren Kukla Profiles International, LLC Gloria Stewart TTI Performance System, Ltd.

THE BRIAN TRINASTIC GRANT PROGRAMHonorPatricia BieblHarold BiebelKaren BiebelRobert BiebelJoan BuckleyMarion ButlerCarol CameronCommunity Industries CorporationSandra DittloffAnita GerthPenny Gneiser-HardekopfAgnes HeckJohn HeckSusan HermanBill HolickyMichele JepsonTammy KwiatkowskiMargaret LambrechtGloria LennonMae NachmanLoraine NegendankVirginia NelsonKenneth PottertonAudrey RahnBarbara RingbergRay ScharpfSteve ScharpfTom ScharpfHelen ShenefieldMarian StoneThe Village At Westhaven

James WrightJonathon Creydt1st Baptist Church of IxoniaAndria Creydt Cheryl CreydtDan CreydtJune CreydtCarolyn CrowleyFar Horizons ImportsArlene RaetherTown & Country InspectionsBevery HansenCap SpecialtyHubert KukowskiSusan KnutsonCheryl MuehleisPatricia AdamsAnonymousLinda AugustsonLori Banker-HornerD'Ann CarlsonSheila Carroll HarperRonna ClineChristina ConwayCotton Exchange Carol DekkerMelissa Easley Sandra EntringerWilliam FadrowskiCris FolkKathleen GehringChris HansenMichael HeinzelmannNancy Heinzelmann Krista HintzNancy ImigRobert ImigRuth JorgensenDaniel JunkerWesley KehlKettle Moraine Corvette ClubDenice KlettNorine KoehlerRobert KulinskiRoger LahmPamela LanganPaula LaunShelly LawrenceMichael LesterLisa LieblThe Metal Ware CorporationJoan Olsen French Lynn PhillipsMary PiehlKaren Post

Clare RudolphMarlene SchaeferMelissa SchoenenbergerClaudia SchurSheboygan Paper Box CompanyThomas SpiekerMarie Trowbridge KonzMarsha VollbrechtMarilyn Wagner Linda WallrichPerry ZamagneNicholas ZeleskiRussell WatkinsMargaret Anderson BowerMark Hancock

MemorialRaymond BauerBessie BauerJoan FoleyMary StultzDan GiblinLinda RamseierJohn NordengrenCarol NordengrenMildred StetzerJoan AndersonLeroy AndersonJeanette HubbardVivan HaydenWarren WrightHoward DickeWarren KuklaGloria StewartTTI Performance System, Ltd.Profiles International

Contributions & MEMORIALS

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NOTE:These donations were recorded from July 1, 2015, thru September 15, 2015.

Donations to our Walk can be found on our website at 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.

All of our donations are listed on our website at alsawi.org

Patricia Biebel

‘

Clarence Bower

‘

Christine Caz

‘

Cathy Claggett

‘

Daryl Dahl

‘

Catherine DiPuma

‘

Michelle Fischer

‘

Michael Flottmeier

‘

Sandra Fredericks

‘

Bryan Friebel

‘

Carole Griffiths

‘

Beverly Hansen

‘

Linda Jacob

‘

Mark Kibler

Beverly Kimpel

‘

Mary Beth Kos

‘

Laural Kvistad

‘

Larry Lohrentz

‘

Dr. Earl Marquardt

‘

Cheryl Muehleis

‘

Eugene Primasing

‘

Benjamin Reese

‘

Sandra Tevebaugh

‘

Chong Vang

‘

Barbara Wolter

‘

Gerald Woznicki

‘

Warren Wright

Honoring the lives and legacies

of those who’ve made an indelible

impact on the ones they’ve left behind.

In MEMORIAMS

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Here’s to everyone who participated in our 2015 Walk to Defeat ALS events.To all the participants who teamed up to walk and raise money, thank you. You are our heroes.To all the sponsors who donated money, time and talents, thank you. Your heroic generosity made these events possible. On behalf of the Wisconsin patients, families, and friends affected by ALS, we offer every sponsor and participant our heartfelt gratitude. We look forward to partnering with you again next year. Meanwhile, please stay in touch at #vsALS.

It’s going to take all of us to defeat ALS.

2016 Participant & Sponsor OpportunitiesEvening of Hope • March 19Stickin’ It to ALS Admirals game • April 15Chasin’ A Cure Tailgate Party at Miller Park • July 22

Click here for more information on these and other events. Thanks.

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NON-PROFIT ORGU. S. POSTAGE

PAIDMILWAUKEE, WI

PERMIT NO. 3815THE ALS ASSOCIATION Wisconsin Chapter3333 North Mayfair Road Suite 104, Wauwatosa, WI 53222

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 262.831.3993 or email us at info@alsawi.org and let us know. Thank you.