hopeline magazine - summer 2013

Making Memories

The HopeLineMother’s Day / Father’s Day Issue

Reyna Castro & Family

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I wish to thank all the sponsors, attendees and volunteers who contributed to the 20th annual Evening of Hope on March 9th at the Milwaukee Hyatt. We were at capacity with 700 guests and had a net revenue of $253,000, which is earmarked for ALS

research. For our 20th year we had Steve, Michel and Rivers Gleason (teamgleason.org) as our Guests of Honor. Steve asked everyone in attendance to be part of the ALS movement. He asked people to invest in this movement and to stand united with Team Gleason in the ght against ALS. Together we must step up to provide funding so we can, in turn, provide the greatest “return on an investment” ever - a cure for ALS. We share Team Gleason’s mantra of “No White Flags.” Thank you, Team Gleason. Please save the date for our 21st anniversary of this black tie event, which will be Saturday, March 8th, 2014.

Please note that May is ALS Awareness month in Wisconsin. We will kick off our 2013 Walk season with the Janesville Walk to Defeat ALS on May 11th. Please begin to talk to family, friends and neighbors about the upcoming Walk to Defeat ALS in your area. The Walks offer the best opportunity to promote awareness and raise funds. Registration for all Wisconsin Walks is now open and we would encourage you to put together a team and register at: www.walktodefeatals.org. Our Advocacy Chairs will be traveling to Washington, DC with delegates representing the Wisconsin Chapter in May to assure that our voices continue to be heard.

As baseball legend Lou Gehrig is forever linked to ALS, we have spent years trying to establish a partnership with the Brewers in our campaign to Strike Out ALS. On Friday, July 19th we will have our 2nd 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, and soda. Tickets and prices are now available at our website at: alsawi.org. We hope you will join us.

Finally, I would like to thank Kirk Topel and Carrie Schmidt from Hal’s Harley-Davidson who have worked tirelessly on the Toast for Hope, which was held on April 6th. The proceeds from this event will make a difference in the lives of individuals affected by ALS and their families.

Spring always heralds new hope. Your ongoing dedication, support and contributions continue to give hope to all.

Thank you.

“Awesome Ain’t Easy”-Team Gleason

FromMelanie Roach-Bekos

contentsIn Every IssueCOMMUNITY EVENTS 3

CARE SERVICES 8

RESEARCH 11

CHAPTER EVENTS 12

IN OUR COMMUNITY 29

CONTRIBUTIONS 34

2013 EVENING OF HOPE 16

THE ALS COMMUNITY COMES TOGETHER TO RAISE MONEY FOR THE FIGHT AGAINST ALS.

TEAM GLEASON 18

READ AN EXCERPT OF STEVE GLEASON’S SPEECH FROM THE 2013 EVENING OF HOPE.

COVER STORY 26

JUDY CASTRO SHARES THE STORY OF HER MOTHER’S DIAGNOSIS WITH ALS.

HAL’S HARLEY EVENT 33

A TOAST FOR HOPE

Features

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Executive Board of DirectorsPresident: Kathryn A. Keppel

Vice President: Joanne BlaesingTreasurer: John Schleicher

Secretary: Danielle Tonelli Mathai

Board of DirectorsBenjamin Becker

Holly BlakeMary Brennan Druml

Dave HannekenLaura Hinrichsen

Jan KaufmanMary Beth Schlecht

Thomas Kettler

Executive DirectorMelanie Roach-Bekos

Events TeamSusie Reed Luz Medina

Zan MartenssonJordan Johansen

Care Services Director Lori Banker-Horner

Care Services TeamRobin Stanczyk

Carolyn SchweitzerJanet Gauger

Carolynne YounkDiane Fergot

HopeLine Designer Sarah James

Email: [email protected]: (262) 784-5257

Address correspondence to ALS Hopeline, 3333 North Mayfair Rd. Suite 213, Wauwatosa, WI 53222

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Community & Family Events

Summer Freeze OutFriday July 19th to Sunday July 21, 2013More Information: Kevin Keating [email protected]

A Day FORE HopeSaturday, July 20th, 2013More Information: Randy Krueger [email protected]

The Inaugural Golf Outing & FundraiserFriday, August 23, 2013Ironwood Golf CourseW270 N. 6166 Moraine Dr.Sussex, WI 53089 More Information: Randy Foss414-427-6500

Please e-mail us: [email protected] informa-tion about your upcoming Family/Community e ent bene ting t e Wisconsin ALS Associa-tion.

We will add to our next HopeLine issue and will also post on our website calendar. T anyou.

2013 Koebel OpenSaturday, June 1st, 2013Menomonee Falls, WIMore Information: Oscar and Rachel [email protected]

A Touch of Glassene t for ALS Researc

Friday, August 16, 2013

Dinner & Concert Featuring Musicians Playing Glass

Instruments

Fox Hills Resort, Mishicot

Sponsored by Thrivent Community

More Information: Jacque Dickenshied

jakiladybug@lake eld.net

Ticket Information: (920) 684-3225

The WAC to Fight ALS

Ice Cream Ride for ALSSunday, August 25, 2013In memory of “Big Ed” HeinzelmannMore Information: Deb Heinzel-man [email protected]

Boesch Bowling TournamentSaturday, October 26, 2013More Information: Todd or Kevin Boesch (262) 375-9227 or e-mail: [email protected]

5Hope through Research - Support through Caring

Fighting ALS One Motorcycle Ride at a Time!

ALS POKER RUN

Disease Apple River

Riders

Hosted By:

Start @ the Straight 8 Bar & Grill

Amery, WI 54001

DN Campground County Line Renegades

Crickets Bar & Grill

Contact: Sandy 715-554-2307

50/50

Prizes @ Every Bar

Lunch & Supper

In Memory of:

$20.00 per name

3rd Annual

Date: Aug./17/2013

[email protected]

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Wedding? Party? Banquet?

Are you planning a special event? We rent out the vases that we use for our Evening of Hope.

If interested, please contact : [email protected]

Locker’s Florist FundraisingLocker’s Florist is proud to offer a unique fund raising program online bene t to Friends of the ALS Association Wisconsin Chapter.

Just go to lockers orist.com alsawi and select the product you would like to send. On the nal page of check out be sure to select “This

is for a fundraising effort,” check box at the bottom of the page and select Friends of ALS Wisconsin Chapter so they receive $2 from every purchase!

House SpeakerOur own Jim Eutzzi is willing to speak at schools, companies and any function you might be hosting to help create ALS Awareness.

He has been the Guest Speaker for the ALS Evening of Hope and also has spoken at many schools.

His willingness to share his journey has had a major effect on students, teachers and faculties.

Please consider inviting him to speak; his words leave a lasting impression.

Please e-mail [email protected] or call 414-831-3986 to discuss.

*Milwaukee ALS Support Group Date: Second Saturday of Each MonthTime: 11:00 am to 1:00 pmPlace: Froedtert Memorial HospitalConference Room NT 2209Address: 9200 West Wisconsin Avenue,Milwaukee, WI.

Use lot on the right of the main entrance off 92nd street. Handicapped parking lot is located on the south side of the hospital. Provides support for people with ALS, their families, friends and caregivers in Southeastern Wisconsin. Contact Carolyn Schweitzer at 414-831-3990 or email at [email protected].

S u p p o r t G r o u p s a n d M e e t i n g sWisconsin ALSA Chapter Sponsored*

Hope through Research - Support through Caring

*Milwaukee ALS Caregivers Support GroupDate: Fourth Thursday of Each MonthTime 7:00 pm Place: Locations vary – locations areavailable in this issue or on Chapter website: www.alsawi.org.

This group meets monthly at area restaurants for support and to discuss issues related to caring for people with ALS. Contact Carolyn Schweitzer at 414-831-3990 or email at [email protected].

*Fox Valley ALS Support GroupDate: Third Tuesday of Each MonthTime: 6:30 pm to 8:00 pmPlace: All Saints Lutheran ChurchAddress: Highway 21, one mile west of Highway 41, Oshkosh, WI

Provides support for people with ALS, their families, friends and caregivers in the Fox Valley area. Contact Diane Fergot at 920-279-4449 or email at [email protected].

Northwestern WI (Chippewa Falls)ALS Support GroupDate: Second Thursday of Each MonthTime: 3:00 pm to 5:00 pmPlace: Chippewa Valley Bible ChurchAddress: 531 E. South Ave. Chippewa Falls, WI.

Providing support for people with neurological diseases, families, friends and caregivers. Contact Julie Chamberlain, LPN at 715-271-7257 or email [email protected].

Madison MDA ALS Support GroupDate: Second Tuesday of Each Month Time: 12:30 pm to 2:00 pm Place: Dean ClinicAddress: 700 S. Park Street in Deli Room 1,next to Fit N Fresh, on the Lower Level, Madison WI. Contact Mary at 608-222-3269.

Duluth-Superior Area ALS Support GroupDate: Fourth Tuesday of Each Month Time: 1pm to 2:30 pm Place: First Street ClinicAddress: 420 East First Street, Aurora Room, third oor parking ramp on First Street, west side of building, skyway to building on second level. Duluth, MN

This group breaks into two groups (PALSand Families Friends Caregivers) on a quarterly basis or as requested. Refreshments are served. For questions or to RSVP call 218-786-5399.

Milwaukee MDA Support GroupDate: Third Monday of Each MonthTime: 7:00 pm to 9:00 pm Place: Froedtert Memorial Hospital Conference rooms A and B Address: 9200 West Wisconsin Avenue, Milwaukee, WI

Provides support for people with neurological diseases, their families, friends and caregivers in Southeastern Wisconsin. Contact 414-453-7600.

Milwaukee Ventilator Users Support GroupDate: First Tuesday of Each Month Time: 6:30 pm to 8:00 pmPlace: 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.

*Central Wisconsin ALS Support Group Date: Second Monday of Each MonthTime: 6:00 pm to 7:30pmPlace: St. Luke’s Lutheran ChurchCommunity Meeting RoomAddress: 10th Street SouthWisconsin Rapids, WI

Provides support for people with ALS, their families, friends and caregivers in the Central Wisconsin area. Contact Jim Johnston at 715- 213-2182 715-423-5990 or email at [email protected].

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It was de nitely a long time in coming—but Spring is here!

Advocacy Day

With Spring comes some important events in the Chapter. Not only is the Walk to Defeat season starting with our Walk in Janesville, Wisconsin on May 11 (www.walktodefeatals.org), but also the Chapter’s Public Policy Committee Board Members, Tom Kettler and Ben Becker, will be travelling to Washington DC for ALS Advocacy Day! Tom and Ben will be joined by Chapter representatives John and Deanna Jaeckel from Hayward, Wisconsin and their daughter, Sara, who will be Wisconsin’s delegation, meeting with representatives of Congress on Capitol Hill. We sincerely thank the Jaeckels for being so open and willing to share their personal story of ALS while advocating for others. This truly makes a difference.

The highlight of the Spring season in Care Services is always the ALS Care and Research Symposium which was held on Saturday, April 20. Richard Bedlack, MD, PhD, Director of Duke University’s ALS Clinic and Chief of Neurology at the Durham Veteran Affairs Medical Center, was the dynamic keynote speaker this year. Dr. Bedlack is leader of the International ALSUntangled program, which uses social networking, such as Twitter, to investigate alternative and off label treatment options for individuals with ALS. Dr. Bedlack shared the purpose of the program and what he has learned. Information is available regarding ALSUntangled via www.alsauntangled.com.

Speaking of alternative treatments,

The Care Services staff and ALS Clinic Teams often get questions as to why information regarding alternative treatments is not routinely made available through the Chapter or clinics. Many times this is as frustrating for the individual and family with ALS as it is for the health care professional. Both would very much like to see an effective treatment answer . . . NOW.

The Care Services and Clinic Teams keep as up to date as possible on the many different alternative treatments that are reported from various sources; however, without the data necessary to ensure that the treatment is safe or effective, they are unable to promote it freely without risk. The Teams’ responsibility to patients and families that are served through the Chapter and Clinics is of the utmost importance. The Chapter and Clinics value and strongly support programs such as ALSUntangled. Dr. Bedlack and his team of specialists understand that the answer is there and may be found through a variety of ways, including unsubstantiated alternative treatments and therefore no stone should go unturned. We encourage Chapter members and families to continue to do their research and bring questions to Chapter and Clinic Staff regarding any alternative treatments that are of interest. Our main goal is working together to maintain hope through support and research and one day nd a treatment and a cure for ALS.

Symposium

We thank all of our Symposium presenters with SPECIAL thanks to our patient and family panel for generously giving of their time and sharing their stories of hope. For more information on the symposium, please see our symposium recap on our Chapter website, www.alsawi.org, and watch for pictures in our next HopeLine issue!

As always, your Chapter Care Services staff is here to assist with questions, provide resources and information or just to listen. Please don’t hesitate to call us at (262) 784-5257 or toll-free at (877) 225-9997.

Lori

Tom Arnson Lee Charles

Eric Falk John Gaynor

Candace (Lobby) Goodman Darlene Gunther Donna Hartmann Steven Hedberg

Mary HenleyPeggy Hilgers Darlene Kubat

Susan Marmurowicz Diane Meyer

Dayton Moody Joseph Moyer

Margo O’Malley Beatrice PosadaKathleen Prebil

Joan RedlinNorma Jean Rombalski

Michelle Spingler Darlene Stocki

Diane StrassmanConstance Ver-Velde

Thomas White

In Memoriam

In memory of t ose w oave lost t eir battle wit

ALS and t ose w o elp support t e g t.

The HopeLine - ALS Association - Wisconsin Chapter

From Care Services Director Lori Banker-Horner

Care Services

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ALS CAREGIVER GROUPMEETING LOCATIONS

The following are the meeting locations for our ALS Caregiver Dinner Outings for the months of April and May. The group meets the fourth Thursday of the month at 7 p.m. This is a special group for all individuals 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 nd out good information and tips in a very relaxed environment. Please Carolyn Schweitzer at (414) 831-3990 or [email protected] for more information or to RSVP for the group. We are looking forward to seeing you!

Thursday, April 25, 2013La Fuente

9155 West Bluemound RoadMilwaukee, WI 53226

(414) 771-9900

Thursday, May 23, 2013That’s Amore

5080 South 108th StreetHales Corners, WI 53130

(414) 425-7150

NEW LA CROSSE SUPPORT GROUP FORMING!!

The Wisconsin Chapter is pleased to announce that a support group is now forming in La Crosse! A dedicated group of individuals led by Alee Troyanek has started to meet monthly on the rst Saturday of each month from 3-5 p.m. at Moose Lodge, 1932 Ward Avenue, La Crosse, WI. This is a special group where you can not only gather information and resources but be surrounded by support and others who understand. If you live in La Crosse or surrounding area, we hope you consider joining us!

For more information please contact Lori Banker-Horner, Care Services Director, (414) 817-1541, [email protected] or visit the group on Facebook: “ALSA-Wisconsin Chapter Support Group in Formation”

MAY IS ALS AWARENESS MONTH!!!

Spread the word on just what ALS and what it does to individuals and families.Help us to raise awareness in your community and help ght ALS!!

Each May we invite you to join us in supporting individuals with ALS and their families by promoting our efforts to raise funds and awareness. As our Walks grow larger and more Community and Family events emerge, we thank YOU for your past efforts and ask you to continue to stand with us to make our uni ed voices heard.

It is often said that volunteerism is the life-blood of any organization. That is especially true of the ALS Association - Wisconsin Chapter. Our Care Services and Fundraising Staffs are amazing, but they could not do all they do without a core group of dedicated volunteers, who return year after year to donate their time and talent in addition to their funds.

Who are these volunteers? For the most part, they are ordinary people whose response to the devastating news that a husband, wife, mother, father, sister, brother, aunt, uncle, grandparent or friend had ALS was to do something, anything to ght the disease. In other words, they are

people like you.

Take some time to think about what you, your family and your friends can do to promote ALS awareness in May. If you need any materials to share the message, please visit our website at www.alsawi.org or call the Chapter Of ce at (262) 784-5257 or toll free at (877) 225-9997. The website contains information on public policy, advocacy campaigns and other ways to raise public awareness of the needs of the ALS community.

ALS Awareness Month is a time to educate and advocate on behalf of the thousands of Americans facing ALS today. People in our community get involved and make a difference. Join them. You’ll never regret it.

March 22, 2013

Dear ALS Supporter,

Yesterday, Congress passed legislation to fund the federal government for the remainder of the current scal year, which ends Sep-tember 30, 2013. Thanks to your outreach throughout the past 12 months, we are proud to report that the legislation includes funding for our two top public policy priorities. First, the bill provides $6 million to continue fund-ing for the National ALS Registry. Second, it includes a nearly 20% increase in funding for the ALS Research Program (ALSRP) at the Department of Defense! The program will receive $7.5 million this year, bringing total funding for the ALSRP to $40 million, all of which is explicitly focused on nding treat-ments for ALS. The President is expected to sign the legislation into law.

These are tremendous victories! They could not have been accomplished without the outreach of people with ALS and their families and advocates throughout the past year. Every program in the federal budget is under

scrutiny and many will be cut signi cantly or eliminated altogether. Thanks to you, ALS programs are not among them.

While this is great news, budget challenges remain. The “sequestration” may lead to some cuts in all programs including the ALS Registry and the ALSRP. The extent remains to be seen. However, we have opportunities to avert cuts and possibly increase fund-ing next year as the FY 2014 appropriations process is now underway. Please keep an eye out for our Alerts and Updates as we will continue to let you know when your advocacy - when your outreach - can make the most difference.

To that end, please encourage your friends, family members and colleagues to become ALS Advocates at http: capwiz.com alsa mlmsignup . Also, follow us on Twitter @ALSPub-licPolicy. By doing so, you will receive the latest news and action alerts that will help all of us continue the ght for a treatment and cure on Capitol Hill!

Thank you again!!


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Research


STUDY DISCOVERS HOW GENE MUTATIONS CAUSE ALS AND OTHER BRAIN, MUSCLE AND BONE DISEASESAs published in the scienti c journal Nature, researchers funded by The ALS Association have discovered how mutations in new genes for ALS cause not only that disease but also other diseases of the brain, muscle and bone. These results also reveal the disease pathways involved in ALS due to other genes and may prepare for the development of new treatments to interrupt these processes.

The researchers found that mutations in genes for certain RNA-binding proteins cause them to switch between alternate shapes and aggregate and to promote the same conformational change and aggregation of the normal protein. This behavior has been seen in other neurodegenerative diseases,

collectively called prion diseases, including mad cow disease and Creutzfeldt-Jakob disease. In those diseases, this ability leads to spread of the disease throughout the nervous system.

“This discovery may lead us to think more broadly about how ALS progresses within the brain and to ask whether a similar spreading process is occurring,” said Lucie Bruijn, Ph.D., Chief Scientist for The Association.

The team also found that mutations in proteins called heterogeneous ribonuclear proteins (hnRNPs) caused an inherited disease in a small number of families with symptoms of ALS, the frontotemporal dementia, the

muscle disease inclusion body myopathy, and the bone disorder Paget’s disease of bone. This cluster of symptoms has recently been recognized as a unique disorder called multisystem proteinopathy. The mutations increased the tendency of the hnRNP proteins to clump together and to induce non-mutated forms of the protein to do so as well. hnRNP proteins normally link to another ALS-associated protein called TDP-43, and the two were found together in the aggregates.

“While these mutations are themselves a very rare cause of ALS, they may provide an important clue about how other forms of ALS spread over time,” Dr. Bruijn said. “Preventing protein aggregation

may be a viable therapeutic approach for many forms of ALS.”

The study was led by J. Paul Taylor, M.D., Ph.D., of the Department of Developmental Neurobiology at St. Jude Children’s Research Hospital in Memphis, Tennessee and colleagues from the United States and Europe. These researchers received funding through The ALS Association’s Translational Research Advancing Therapies (TREAT ALS™) program, which funds a diverse portfolio of research at leading institutions all over the world.

First published at alsa.org on March 3, 2013

In a powerful demonstration of reprogramming’s potential to treat human disease and injury, scientists at University of Wisconsin-Madison turned a rhesus monkey’s skin cells into early brain cells, then implanted them successfully in the monkey’s brain.

The experiment, published Thursday in the journal Cell Reports, worked so well that the reprogrammed cells grafted onto the brain and appeared indistinguishable from the cells already there. Scientists were able to identify the new cells only because they had been tagged with a glowing green uorescent protein.

Before being injected with their own cells, the three monkeys in the study were engineered to simulate the effects of Parkinson’s disease.

Although the experiment was carried out on monkeys, the results suggest that such an approach could work in humans, raising the possibility that doctors might someday replace the neurons lost to Parkinson’s or the cells damaged in spinal cord injuries.“I think this is the rst proof-of-principle demonstration that this personalized cell therapy may work,” said UW neuroscientist and stem cell researcher Su-Chun Zhang, who led the study. “We designed this experiment speci cally for mimicking future therapies in patients. That’s why we used monkeys.”

Zhang said his lab is now using a grant from the National Institutes of Health to do long-term studies of monkeys that receive injections of reprogrammed cells to determine whether the cells help improve symptoms. If the cell treatments prove bene cial, the next step would be to carry out clinical trials on human patients.

“I think it’s extremely signi cant,”said Eva L. Feldman, director of the Neuropathy Center at the University of Michigan. “I’m very excited about their paper and think it’s got a great deal of scienti c potential and hope.”

Feldman, who was not involved in the UW experiments, said they mark an important moment in the discussion of what has been called personalized medicine - the idea that a patient’s own cells can be used to treat a broad spectrum of ailments. Such an approach would blunt the threat that a transplant might be rejected or send the immune system into battle.

Personalized medicine, Feldman said, “has been more of a theory to this point.”

The theory gained momentum with discoveries in 2006 and 2007 that showed scientists could rewind the developmental clock, turning a skin cell into the equivalent of an embryonic stem cell, but without the destruction of an embryo. This frees medical science to envision a day

when patients’ blood, liver, brain and other cells may be banked and used to treat them when they suffer injury or disease.

The watershed of cell reprogramming was recognized last fall when the Nobel Prize in Medicine was awarded to Shinya Yamanaka of Japan and John B. Gurdon of England. But important work leading to the breakthrough came also from UW, where James Thomson became the rst to isolate and grow human embryonic stem cells in 1998, then tied with Yamanaka in the race to reprogram human cells, achieving that landmark in 2007.

The UW study in rhesus monkeys now takes these advances and begins the long process of steering them toward medical practice.

Feldman said her lab has been taking skin biopsies from patients with amyotrophic lateral sclerosis, more commonly known as Lou Gehrig’s disease, and reprogramming those cells. In doing so, Feldman’s team can turn the skin cells into nerve cells to replace those destroyed by the disease. Similar experiments have been taking place all over the world, but most of the work has involved modeling and trying to treat diseases in a lab dish, not in an actual person.

Because of the physiological similarities between humans and monkeys, the UW experiment

represents a signi cant step toward eventually attempting cell treatments in people with a host of ailments including heart disease, diabetes and Alzheimer’s.

“This is a very signi cant paper in the development of cell therapies for Parkinson’s disease,” said Ole Isacson, a professor of neurology at Harvard Medical School who was not involved in the study. Isacson added that the UW lab’s report demonstrates that reprogrammed cells from an “individual (primate) integrate well in the brain and could potentially restore function in a patient.”

Zhang said the reprogrammed cells were injected into two areas of the monkey brain, the basal ganglia and the midbrain. Both areas help to coordinate movement and are damaged in Parkinson’s disease. This is why people with the disease shake and have dif culty with walking and coordination.

One of the most signi cant ndingsof the UW study was that scientists could not identify the point at which injected cells grafted onto the monkey brain. That indicated that the animal’s brain regarded the new cells as part of itself.

Zhang said the transplanted cells seamlessly forged connections and began functioning in the brain’s networks.

UW STUDY IS KEY STEP TOWARD TREATING DISEASE WITH STEM CELLS

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Upcoming Chapter Events

2ND ANNUAL

CHASIN’ A CURE TAILGATE PARTYHelp Shut Out ALS at Miller Park Friday, July 19, 2013

TAILGATE @ 5:30 PM GAMETIME @ 7:10 PM

$65Loge Level Outfield Box Seat (Section 232)

TICKET PRICES

$55Loge Level Bleacher Seat (Sections 233-237)

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 19th. Ticket price entitles you to one entry to the event. Please call the ALS Office with any questions (414) 831-3986.

See the Brewers vs. Florida Marlins. Plus a private tailgate party featuring a concert by Chasin’ Mason, an ALS t-shirt, a famous Sobelman burger and your choice of Jimmy Luv’s Bloody Mary, beer or soda. Last year’s event was sold out, so get your group together now and join us for one of the best parties of the summer. And certainly one of the best causes.

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13The HopeLine - ALS Association - Wisconsin Chapter

REGISTRATION IS NOW OPENTo register for a Walk in your area visit: www.walktodefeatals.org

2013 Walk Location & Dates

JANESVILLESaturday, May 11, 2013Lion’s Beach Park1404 Palmer DriveJanesville, WI 53545Registration: 9:00 amWalk: 10:00 am

PLATTEVILLESaturday, September14, 2013Mound View ParkPlatteville, WI 53818Registration:10:00 amWalk: 11:00 am

APPLETON Saturday, September 28, 2013 AppletonMemorial Park1620 E. Witzke BlvdAppleton, WI 54911Registration: 8:00 amWalk: 10:00 amNo dogs allowed

MILWAUKEESunday, October 13, 2013Green eld Park2028 S. 124th StreetMilwaukee, WI 53227Registration: 8:00 amWalk: 10:00 amNo dogs allowed

1 Hope through Research - Support through Caring

Chapter UpdateCongratulations to ALS Intern Jordan Jo ansen on receiving 2 nominations from t eSociety of Professional Journalists on er piece T e Gift of Gab about Jim Euti i.Her piece was nominated for in-dept and feature reporting.

THE GIFT OF GABHow One Man’s Passion Evolved From A Devastating Diagnosis

Alt oug it’s not my plan I do plan on being ere for a long time. Jim Euti i

The symptoms began six years ago in his hand and gradually progressed up his arm. After months of living under a grey cloud, he scheduled an appointment at the Mayo Clinic in Rochester, Minnesota. He was tested, poked and probed for four days. At the end of his visit he sat down with the doctor who asked if his wife had accompanied him on the trip. He was alone. She asked if they could contact his wife over the phone.

“I said, ‘Sus, I’m sitting here with the doctor and they’re going to go through the results.’”

The doctor said that Jim Eutizzi, a 47-year-old husband, father of four and successful businessman, had ALS. There was silence in the of ce and on the other end of the phone. He was in disbelief. He walked out of the doctor’s of ce imagining he would die of ALS in two short years.

Amyotrophic Lateral Sclerosis, more commonly referred to as ALS or “Lou Gehrig’s Disease,” is a disease with no cure that usually

results in paralysis or death within a few years of diagnosis.

Eutizzi spent the four-and-a-half hour drive back from Rochester wondering how he would face his family and trying to comprehend the devastating news. “I think I cried the whole way home,” he says.

With two teenagers, a nine year old and a six

year old at home, losing hope and allowing the disease to take control of his life wasn’t an option.

“Life goes on,” he says. “I told my kids that they have to promise me that this does not change their dreams or their future, because tomorrow, assuming we all wake up, ‘you have school and you have hockey.’”

Eutizzi began visiting the ALS Clinic at Milwaukee’s Froedtert Hospital in 2006. The clinic was started by Dr. Paul Barkhaus in 1997 and was of cially certi ed nine years later. It provides patients with a team of social workers, dietitians, speech and swallow specialists, physical therapists, occupational therapists and respiratory therapists.

Barkhaus, a professor of neurology and physical medicine and rehabilitation at the Medical College of Wisconsin, began studying ALS in 1980. “ALS will affect an arm or hand, a foot or leg, it may begin in the muscles that control our speech, chewing and swallowing,” he says. “In the beginning some may think it’s just a cold.”

Barkhaus says that it is the most common type of motor neuron disease. ALS causes weakness and spasticity, slurring in speech, dif culty in swallowing and breathing and will progress over time until all of the regions of the body are involved in the neurological breakdown. All regions, that is, except the mind. ALS patients are acutely aware and cognizant of slowly becoming trapped in their own bodies.

While Dr. Barkhaus is ghting on the front lines for the ALS patients of today, there’s another team at the Medical College of Wisconsin ghting for the ALS patients of tomorrow.

Allison Ebert is an assistant professor in cell biology at the Medical College of Wisconsin and played a key role in securing a $40,000 grant to help continue ALS research. Ebert says that the funding she applied for will hopefully help her team understand more about how the disease develops and how best to reduce some of the paralysis and muscle weakness associated with ALS. Funding for the grant was approved last summer.

15

“Our goal is to use stem cells to generate the cell types affected in ALS to understand how neuron and muscle interactions can lead to ALS, and whether we can target these interactions for therapeutic intervention,” she says. While clinical research is crucial in nding a cure for Eutizzi and all ALS patients, patient support is also critical.

The ALS Association Wisconsin Chapter was founded in 1987 and their vision is to create a world without ALS. Melanie Roach-Bekos is the executive director of the ALS Wisconsin Chapter.

“Our mission is to lead the ght to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig’s disease and their families to live fuller lives by providing them with compassionate care and support,” says Roach-Bekos.

The chapter offers ALS patients and their families the opportunity to borrow communication devices and hospital equipment to help bring a sense of normalcy to their lives after the diagnosis. The chapter also offers support groups, caregivers and social workers.

“We are huge on creating awareness in the market, because if people understand how devastating ALS is, I believe they will get involved,” she says. “We leave no stone unturned in our relentless search for a cure.”

Roach-Bekos has been involved with the ALS Association for over twenty years. After losing her parish priest, a co-worker and close friend, Jeff Kaufman, she felt she had discovered her purpose.“It was a sign that this is really where I need to be,” she says.

Roach-Bekos credits Jeff Kaufman, who died of ALS in 2010, for inspiring her to become more involved in the organization. “He was always someone I really looked up to and thought the world of,” she says.

Kaufman lived with ALS for an amazing 21 years and died at the age of 54. He was one of the founders of the ALS Evening of Hope, a Milwaukee area black tie dinner and auction whose proceeds are distributed to ALS researchers across Wisconsin. The Evening of Hope has raised over $1.9 million.

The chapter’s success relies heavily on community support and funding. Katie Brennan, a niece of Jeff Kaufman, and her family have been involved with the ALS Wisconsin Chapter for over 20 years.

“The Brennan family has never been known to sit silently on the sidelines,” she says. “When Jeff was diagnosed, the entire family was mobilized to ght alongside him. There is strength in numbers and we have a big one.”

Brennan says that her immediate and extended family have worked in almost every role within the ALS Wisconsin Chapter, from envelope stuf ng to emceeing the marquis Evening of Hope, a Brennan is somewhere in the mix.

“Anyone who is woven in the fabric of ALS is charged with keeping

awareness and motivation in the forefront,” she says. “It’s an honor to work with the people in the organization, and I’m constantly trying to, in the words of Jeff Kaufman, ‘be better.’”

ALS eventually took away Kaufman’s ability to breathe and speak on his own. Once the voice of ALS, he has now passed the microphone to Eutizzi. “Jim Eutizzi continues Jeff’s mission to increase ALS awareness and pave the way toward a cure,” says Roach-Bekos.

Sharing his story for the rst time, Eutizzi took the stage at the 2012 Evening of Hope and agreed to be the new voice of ALS, as long as he had a voice.

“Jim has the strength, drive and humor dad brought to the ALS Association,” says Nora Kaufman, one of Jeff Kaufman’s four children. “He is a wonderful spokesperson for the organization. My only regret is that we still need a voice for ALS.”

After speaking at the 2012 Evening of Hope, Eutizzi became passionate about motivational speaking and bringing awareness to a devastating disease that has affected him, his family and many others.

“What was so powerful about having him as the guest speaker was that he was you, he was me, he was every person living their life,” says Roach-Bekos. “He has handled his diagnosis with such elegance, grace and poise. Everyone can relate to him.”

Roach-Bekos and her team at the ALS Wisconsin Chapter have created a schedule for Eutizzi to speak at a new high school every month during 2013. There was a void in Eutizzi’s life when he had to end his career, but that void was lled when he began working closely with the ALS Wisconsin Chapter.

“I have a new cause and I’m actually doing something I love to do because I’m still out there talking, still using the ‘gift of gab,’” he says. “I have a purpose. If seeing a 15-year-old walk up with tears in their eyes saying, ‘I’m going to get involved’ doesn’t make you feel good, I don’t know what will. It’s better than any paycheck I’ve ever gotten.”


1

2013 Evening of Hope

1

2013 Evening of Hope

17

“The good teams overcome adversity.They face fear head on with a calming sense of certainty.That is a winning formula.”

~

AN INSPIRATION AT THE EVENING OF HOPE


1

To watch the video Steve Gleason referenced in his speech at the Evening of Hope, please visit:

https: vimeo.com 61401074Password: tg

Thank You Team Gleason“No White Flags”

P otograp er: Jennifer Tou ey

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Jim Eutizzi: Everyone here tonight will go home with a t-shirt that says “No White Flags”. Looks like we are all of cialmembers of the team. What does “No White Flags” mean?

Steve Gleason: The slogan was born when we rst launched our Team Gleason Experiment. This is the adventure portion of our mission. I wanted to send ALS patients on epic life adventures. Adventures that would, hopefully, change lives. It was important to me that these adventures were not white agsbefore a patient dies. Rather, I wanted the adventures to be an awakening and inspiration to live.

Jim Eutizzi: Our invite for tonight said: “Save my voice, my lungs and my thumbs and I promise to change the world”. Can you share with us what this means?

Steve Gleason:Well, that was a challenge, of sorts, to the scienti c community. At the time, my thumbs, my voice and my lungs were all I had left to be productive. Since that comment, I have needed to replace my thumbs with my eyes and my voice with my synthetic voice to continue to be productive. I have told my family and friends that I will continue to live my purpose, continue to do what I love, with people whom I love. In the process, I will continue to be productive and as a result, I believe the group that surrounds me will change the world. On the topic, I know you have partnered with Clive Svendsen. Clive is a great scientist and I believe he is on the path to a cure to end ALS.

Jim Eutizzi: Tonight and moving forward you can consider everyone in this room on your team. Wisconsin is with you.What else do you need from us?

Steve Gleason: Good question. I think because of circumstances in the past, ALS patients with no options were forced to fade quietly and die. For me, this is not ok. I think we will nd a cure only when the general public has intimate knowledge of what ALS is and intimate knowledge of what it does. I think the current generation of PALS, with the help of technology and some momentum, are at a point where their voices are starting to be heard. The general public is getting a glimpse of what ALS is and what it does. This is a start. This is a foundation. But more must be done.

I believe that we have the right people, like Clive Svendsen, in place to nd a cure for ALS. I believe the public is beginning to tune into this disease. With the correct support and resources, we can cure ALS. Tonight is your chance to be a part of this movement. I am asking you to invest in this. To provide the funding so we can, in turn, provide the greatest “return on investment” ever, a cure for ALS.

T e following is an excerpt from Steve Gleason’s speec from t e 2013 Evening of Hope. Jim Euti i as ed Steve Gleason t e following uestions:

“I wanted to send ALS patients on epic life adventures. Adventures that would, hopefully, change lives. It was important to me that these adventures were not white

ags efore a patient dies. ather, I wanted the adventures to e an awakening and inspiration to live.”

2P otograp y by Claire Colton

2

Making Memories

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ItIt all started in March 2012 when my mother, Reyna, was recovering from a knee replacement. For three months, she had been going to therapy and trying to get her life back to normal, so she could return to work. All was going well until she began to experience pain in her left leg and sudden foot drop. My mom consulted with many doctors and had multiple tests performed to nd out why she was experiencing these new symptoms.

The day my mother was diagnosed with ALS was one I will never forget. It was just a few weeks before Christmas. My brothers and I went with my mom to her appointment. Reyna was diagnosed with ALS at Froedtert Hospital in Milwaukee in December 2012. Even after she was diagnosed, she had her doubts. My mother tried to research any and every other possibility there could be for these symptoms.

Given that our family has generally always been close, our mother’s diagnosis has brought us all even closer. My mother has long lost friendships that have started to resurface. She enjoys going to church and support groups to keep her spirits high. This condition has been very devastating for the entire family, but I notice my mother doing all that she can to continue to live a normal life. My mother loves spending time with her children and grandchildren. She likes having friends and family come together for birthdays, holidays and random picnics. I see the joy and happiness in her eyes, so I try to organize gatherings as much as possible. My mother has three cats ~ Evvie, Rave and Oreo. Her cats bring her all of the joy in the world. They know my mother and can sense when she is feeling down and they are always there to comfort her when she needs it.

Before my mother was diagnosed with ALS, I had no knowledge of this disease. Perhaps I didn’t do enough reading or research in the past.I never knew that a condition like this could ever exist, its symptoms or what kind of affects it has on the individual and their families. I am now much more aware of this disease and how to deal with certain obstacles my mother may come across. Although we have yet to attend an ALS support group, we have been with other local support groups that have been able to provide my mother with the strength to go on with ALS every day. I am ever so grateful for all of the people who have been able to give us comfort and support during these times. Surely, we will be attending some ALS support groups sometime in the Spring.

At times, I do see my mother get upset and frustrated that her life is changing. Unfortunately, my mother

struggles day-to-day with her condition, as she lives alone and has to care for her eighty-two year old mother as well as herself. My brothers are doing what they can to make her living space easier for her to get around. We want to make living with ALS, for my mother, as easy and manageable as possible.

I want my mother to know that even though I may not live close, I am always there. I am always thinking of her. I want her to know that I may live ninety minutes away, but if there is ever anything she needs, she can always count on me, whether it be running errands for her, cleaning her house, taking out the trash, caring for her cats or simply calling me to tell me about her busy day. I will always be there.

My mother is my best friend and means the entire world to me. For Mother’s Day what I would like is for her to live her life to the fullest. Have faith, believe, love and most importantly, to live in the moment. Time is of the essence, so let’s make as many memories as we can.

ts symptoms

2

Nobody enjoyed the beach more than Josh Thompson. He was an avid surfer. He loved taking his family to the beach. He grew up on the beach and thought he’d be riding his board for years to come. But in late 2006, Josh was diagnosed with ALS. Josh had to turn his attention from riding waves to ghting ALS, a battle few so young have to face.

JT’s Grommet Island Beach Park and Playground for EveryBODY is the rst of its kind in America. The idea was born when Josh Thomp-son’s family wanted to go to the beach, but Josh stayed behind because of the dif culty of getting his wheelchair to the beach, across the sand and down to the surf. His family wondered how many people never went to the beach for the same reason. The park idea was born. Bruce Thompson, Josh’s dad, took the idea of a 100% ac-cessible oceanfront park to the City of Virginia Beach where it was embraced with enthusiasm. If you build it, they will come.

Over the past 3 years, more than 20,000 people have gathered at JT’s Grommet Park. This park is testament to the impact families, busi-nesses and communities can have when they work together to build a better life for those with ALS, and search for treatments and a cure for ALS.

Thank you, Thompson Family.


The Virginia Beach Community


In Our CommunityA visual snapshot of the Wisconsin community coming together to strike out ALS


Thank You West Bend High School& Clark FamilyWest end Hig Sc ool raises $2,740.68 to elp g t ALS.

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Jim Eutizzi Speaks at Waukesha West

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Jim Eutizzi Speaks at Waukesha West

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Live. Laugh. Love.This is a story about Royal Goodman and his wife, Candace. Love birds from the start, Royal and his Candy Girl were forever in love. They held hands, cuddled, and kissed—beaming with nothing but happiness and affection for one another.

Candace was intelligent, beautiful, affectionate and vibrant. Royal was her prince and she his princess.

On January 7th, 2013, Royal lost his beautiful Candace to ALS.

This is an excerpt from a letter Royal wrote about his Candy Girl:

“It is so sad that such a beautiful person had to have this dreadful and fatal ailment. She fought a brave battle to live the best life she could and would not let the disease control every minute. Together the two of us tried to enjoy our love and live together, and we did.

Despite having to use a Dyno-Vox speaking device, Candace wanted to be included in conversations, normal chitchat. Becoming frustrated when people had little patience and didn’t allow her to nishspeaking, or avoided conversing with her all together.

Some people don’t realize that behind that broken body is a person who has their mental faculties intact. It is just the body that doesn’t work.

I am one lucky man to have had Candace for my wife. My heart has a large piece missing and that will never change until I meet my lovebird again in the Great Beyond. She was my one true soul mate in life.

I miss her so, but I am thankful for the time we had together. I love you Candy honey.”

-Royal Goodman


There will be additional Toast to Hope photos in the next HopeLine as well as on our website: alsawi.org.

Hal’s Harley Toast to Hope

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ALS ContributionsMEMORIALSREBECCA BARBINanette ElderROBERT BATTENConstance BattenCAROL BAUERScott BauerDALE BROOKOUSERKenneth BehlingWilliam BrookhouserDorothy BrookhouserKaren BrownNancy CampionRobert EdquistJerald FrickenDouglas FryBonnie GundrumSusan GyarmatiJoanne HabermannSharon HogueEllen HolyokeKatrina InversonJohn LaffeyEmmett LamboCurtis LangScott LeppertMary MauerVirginia MayerRobert PrinzWilliam SchulerMary SchulerJames ShulerE. A. SpieldennerShirley WarberRichard WrubbelMARY JANE CLEMENTIKarla VandenBoomLOIS COXEYFrederick CoxeyDANIEL CZACHORKathy CzachorNANCY CZARNECKIJulie CzarneckiJUDITH DAWSONWallace AndersonJOSEPH DROESSLERWayne ZieglerAUDREY EDMUNDSMarvin EdmundsGERALD FAHLMary Fahl GEORGE FERGUSONRose Marie FergusonRONALD FISHBeth HansingKATHY GUERLINGERAnita HantzschKENNETH GUNDLACHNancy GundlachRALPH HAASEDiane HaaseSTEVEN HEDBERG

Thomas BunckBecky CoviSheree FroemkeDavid GardnerBeverly HannisBetsy HedbergAmanda KurszewskiElizabeth LemeryMary LemeryMaureen MurraySandra NovakRUTH HENDERSONSharon WeigeltPEGGY HENSELKenneth HenselCAROL HERINGFred BornPEGGY HILGERSLawrence HorbinskiBarbara MartinRICHARD HOLYOKEEllen HolyokeJEFF KAUFMANJanice BrightSUSAN KEATONJane HendricksBRIDGET KELLERCarol McCoyPHILLIP KETTERLisa TimblinSUANNE KETTLERKathy CohanMark CohanSharon FitzsimonsGERALDINE KOWALSKIEllen KowalsiJOAN KUGLITSCHMarion KuglitschEDITH LEMAYMichael LarsenNadean LarsenRICHIE MAHLERKeith GrayWENDELL MEYERHarriet MeyerMARVIN MILLERDiane MillerJIM MILLERCharlotte ReimerDON MIYAMAESally OnsrudDonna SmithWILLIAM MOLDENHAUERMoldenhauer Landscape & Design, Inc.BARBARA MULLIGANJonathan MulliganCYNTHIA MURPHYSusan PerryJACK NORMANDonna NormanJEAN OLSONDonald Olson

MARGO O’MALLEYCarol AndersonWilliam CrandallRoy DemetreCynthia EvansDaniel GebhartLaurence GrossPhyllis JacksonLisa KemperCarol Ann PulsConda SchenkelRose Ann ScrantonPatricia SpoltmanJosephine TrachyDiane VachonJudy WeePatricia WyssWESLEY OVERTURFNancy GreenMERLE PARKERNancy ParkerDOUGLAS PETERSENJudy PetersonNORMAN PETERSONMarilyn PetersonMARK REDNERMary StultzROBERT ROACHDonald ShannonKENNETH SCHERNEKERPatricia BarkerCONNIE SCHNEIDERAlan BuschmannPATRICIA SCHNEIDERWalter SchneiderMARK SCHULERBarbara BrandtJames GreethamDENISE SCHUTTFirst National Bank & TrustEdna ArnoldBadger Grain Co., Inc.Mary Ann BerveKenneth BlankeDaniel BrandlJames BrovoldMarlin CobbEugene DayWilliam DeschnerFarm-City Elevator, Inc.David FeatherstoneRonald HalstedEleanor HardtGwen HoffmanMary JohnsonMary JordanThomas KnauerLorraine KoehlGeorge KoehlKevan LeedleCecil LogtermanLarry Luiting

John NagelStanley OdlingKaren OldenburgRuth OlsonHarold RambowRussell RichardsonJudith RossiSusan SchellhaseGloria SchmidJohn SchuttShirley SkeltonJanet SonnentagTri City National BankKathy VeleyDonna WaltersMichael WelchLee WenzelDelmar WilliamsCRYSTAL SCOTTSusan PerryRON SCHAFFERClaire SchafferMARGARET SIBLEYLarry SibleyPATRICIA SKRADE LARSONMelinda SkradePhil SkradeCAROL SOYKAllen AmerlingRandall CunzenheimPeter DutkievicBarbara KetterJane KnueppelCary SerweBruce SoykFREDERICK STIEBERGimbel Reilly Guerin & Brown LLPDIANE STRASSMANElectronic Theatre Mary LawryJUDY STRZELCZYKJane BoeschLAWRENCE THIELENMarita PendergastALEX THIENMarjorie ThienRICHARD TIPPEYJean TippeyWILLIAM WEIHMEIRBruce CreenJane CreenMary WeihmeirJANE WEISERLinda ZiehmJASON YAGERRonald YagerHENRY ZELINSKICarol ZelinskiDELBERT ZUNKHelen Zunk

HONOR TRIBUTESGERALD BASSArlene BassLarry BassRachel HymanSusan SellmanTerry VillacruzRoberta Forman

DONATIONSDean AmhausSarah BeckerDebra BlaskaClassic Pet Grooming Douglas BowerAudra BrennanClark BrunnerGloria BurkThomas CallanSusan ClaussenKeith CornilleSandra DallyTerry DietrichThomas DoucetteRobert EhlenfeldtKaylene EngelThomas FasoloRebecca FinnerudSue GloedeBenjamin GonringMargaret GoresKathryn GradyKeith HernkeCarol HillmerJewish Community FoundationSue KarolczekKathryn A. KeppelStephanie KidneyAmy KuhagenLois LangMarcia LiegeyKaran LindemannJohn LingleCathy MeadeKevin MeagherLynn MizakLynn MizakJohn MurphyDaniel NecciAnthony NecciMinakshi NihalCathleen PetersMary PowersMichael QuirkGerald RiederAndrew SchusterNeil SiegelLaura SimsLaura Sims-BundyRaymond SteldtAndrew StockhausenRichard Streff


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John Van BerkumDonald WeberSandra Ann WiegandThomas WilcoxJeanine WolfHeidi Wurlitzer

BRIAN TRINASTIC MEMORIAL GRANT PROGRAMSandra KagelmannArnold LeestmaCheryl ScheuermanEileen SempfMary SkwierawskiBrian WiegandDALE BROOKHOUSERDorothy BrookhouserNancy CampionRobert EdquistJerald FrickenBonnie GundrumSusan GyarmatiSharon HogueEllen HolyokeKatrina InversonJohn LaffeyEmmett LamboScott LeppertRobert PrinzWilliam SchulerJames ShulerShirley WarberRichard WrubbelBRIAN TRINASTICDavid TrinasticMarcia TrinasticSandra TrinasticTHOMAS WHITEClark View Farms, LLCMark ForsytheJohn SchallerSally White

Note: These donationswere recorded from Janurary 1, 2013 thru March 13, 2013. The donations to our Walk to Defeat ALS will be posted on our website www.alsawi.org at the end of November. Some donations from these events are still being tabulated, so if your contribution is not listed, it likely will be listed in the next issue.

As a reminder, donations to the Chapter are identi ed as follows:

Memorial: Is in memory of a person who has died, regardless of whether that person was an individual with ALS.

Living Tribute: Is in recognition of an individual living with ALS.

Honor: Is in recognition of any other person, event or milestone.

Contribution: Is any other donation, in cash or in kind, where a speci c honoree is not identi ed.

To ensure proper attribution, please provide the category of donation and the name of the

person being honored. *We have implemented a new database.


NON-PROFIT ORGU. S. POSTAGE

PAIDMILWAUKEE, WI

PERMIT NO. 3815

THE ALS ASSOCIATIONWisconsin Chapter3333 North Mayfair Rd. Suite 213Wauwatosa, 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 want to receive this newsletter or other Chapter mailings, please help us save on costs by calling 262-784-5257 or email us at [email protected] and let us know. THANK YOU!

ALS Association Wisconsin Chapter 2 2 7 5257 info a sawi.or 3333 N. Mayfair Rd. Suite 213 Wauwatosa, WI 53222

Leave a Legacy of HopeYou believe in the work of our Chapter and you want to ensure that The ALS Association will continue to fund cutting-edge ALS research and provide vital services to those living with ALS.

By remembering our Chapter in your estate plan, you create a legacy of hope for future generations of ALS patients and their families. Your gift provides hope that a cure or treatment will be found and hope that comprehensive patient services can be found all over the country.

A myriad of easy giving options exist from naming our Wisconsin Chapter as a bene ciary in your will to a more complex trust arrange- ment. You can make a gift today using assets such as securities, real estate, or personal property.

For more information about how to leave a legacy of hope, please feel free to call us at: 262-784-5257.

hopeline magazine - summer 2013

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