INFORMER - ALS Association - Minnesota Chapter

THE 

INFORMER 

July 

/ August 2010 

The ALS Association, Minnesota/North Dakota Chapter, also services Superior, Wisconsin. 

MAY WAS ALS AWARENESS MONTH AT TARGET FIELD 

O n a cool and damp Tuesday evening, May 4th , several persons with ALS (PALS) and their families were 

treated to an evening at Target Field to watch the Minnesota Twins take on the Detroit Tigers. The Twins 

organization donated 100 tickets in honor of ALS Awareness Month. Despite the less than favorable weather, 

fans enjoyed pre-game festivities that included PALS Tom Lijewski reciting Lou Gehrig‘s famous farewell baseball 

speech from 1939. Also, PALS Michael Winston threw out the first pitch to Twins manager, Ron Gardenhire, and 

PALS John Mamer read Governor Pawlenty‘s proclamation that May was ALS Awareness Month in Minnesota. It 

was an evening to remember. 

PALS Tom Lijewski, on the big screen reciting 

Lou Gehrig‘s farewell speech 

PALS Michael Winston, shortly after 

throwing out the first pitch to Twins 

manager, Ron Gardenhire 

PALS John Mamer, reading Governor 

Pawlenty‘s proclamation 

Thank you to the Minnesota Twins organization for making this possible. 

A DAY TO REMEMBER 

J oin us Tuesday, July 20th for A Day to 

Remember-Fargo. This event will honor 

those who have died from ALS with music, 

reflections, readings, and lighting of candles. 

A Day to Remember will be held at Innovis 

Health, 3000 32 nd Ave S, Room LH 253, in Fargo. 

Follow signs posted at the entrance. 

The program is from 4:00—5:00 p.m. A reception 

follows. This informal event is open to everyone. 

We hope to see you there! 

PUBLICATIONS FROM NATIONAL OFFICE 

ARE NOW AVAILABLE ONLINE 

ike many other organizations, the National Office of The ALS Association 

L is ‗going green‘. Their two publications are available online. 

VISION: CREATING A WORLD WITHOUT ALS Spring 2010 issue is 

available on The ALS Association website (www.alsa.org) or by directly 

linking on: http://www.alsa.org/resources/magazine. This issue 

addresses the latest in ALS research and includes some heartwarming stories 

of love and courage. 

RESEARCH ALS TODAY. Click here for the Spring 2010 electronic 

issue or by going to the National Office of The ALS Association website, 

www.alsa.org, under the Research tab. 

UPDATE ON THE ALS MARCH OF FACES ORGANIZATION 

e are saddened to report that the non-profit group, ALS March of Faces (MOF), has dissolved. The ALS MOF was a patient/ 

W caregiver governed and operated organization, dedicated to heightening public awareness of ALS, and advocating on issues that 

concerned and/or benefitted PALS. It was started in 1997. The group created the ALS MOF banner that was a pictorial display of 

individuals with ALS and was used as an advocacy and awareness tool. The banner traveled extensively across the country and around the 

world. Our Chapter proudly hung these banners at our events, including the Walk to Defeat ALS sites, our Sharing the Journey 

conference, and more. We encouraged people to consider having their photograph, or that of a loved one with ALS, on these banners. 

If you have recently submitted a photograph to this organization, unfortunately, your photograph will not go on a new banner. We will 

keep you updated if we learn more. 

www.alsmn.org July/August 2010 1

MN/ND 

I 

ALS 

EXECUTIVE DIRECTOR’S REPORT 

was at an event recently where someone told 

me they hope I‘m out of a job soon. I 

couldn‘t agree with him more. And I can tell you 

that our entire staff feels the same way. We know 

we‘ll find other jobs and it would be nice to know 

that no one would have to live with ALS again. Sue Spalding 

Executive Director 

Unfortunately, no one knows when this day will 

come and that‘s why it‘s important to continue to raise money to help 

those living with the disease, raise ALS awareness and continue funding 

ALS research. One of the ways The ALS Association does all of these 

things is through our Advocacy efforts. Last year our advocacy efforts 

brought in more than 45 million dollars for ALS research along with 

millions of dollars in benefits for veterans and their families affected by 

ALS. See the highlights listed below or check out the complete list by 

clicking here. 

We championed additional funding for research as part of the 

Economic Stimulus package enacted into law in 2009, which resulted 

in more than $34 million in grant funding awarded for ALS 

research projects across the country over 2 years. As a result, total 

government funding for ALS research in 2010 may increase by as 

much as 30% to between $70 and $80 million. 

We secured a 50% increase in funding for the ALS Research 

Program (ALSRP) at the Department of Defense, as Congress 

provided $7.5 million for the program this year. The ALSRP is the 

only ALS specific program at DOD and is focused on translational 

research with the explicit goal of finding a treatment for 

ALS. With this funding, Congress and DOD will have generated a 

total of nearly $18 million for ALS translational research in just 

three years 

This year our advocacy momentum is only growing. We had nine people 

from Minnesota and three people from North Dakota travel to 

Washington D. C. this year. We joined hundreds of others from across 

the country to speak out for ALS Advocacy. (see entire story on page 

12.) It‘s always a pleasure representing the people of Minnesota and 

North Dakota in Washington D. C. and when I see results like we had 

last year, I know there‘s nothing stopping us until a cure is found. 

WELCOME PATTI TOLO 

atti is our new Vice President of Development. She comes to us 

P with 25 years of experience in the non-profit sector with expertise 

in the areas of major gifts, gift planning, annual giving, ePhilanthropy, 

direct mail, telemarketing, special event organization and strategic 

planning. Most recently, she worked as the Director of Annual Giving at 

Interlochen Center for the Arts in Michigan and prior to that held the 

position of Director of Development in the 

School of Fine Arts at the University of 

Patti Tolo, Vice President 

of Development 

Minnesota, Duluth. She spent ten years 

working and volunteering with diseaserelated 

organizations including the Arthritis 

Foundation and the American Heart 

Association. Patti grew up in Duluth and is 

thrilled to be back in Minnesota after 

spending three years in Michigan. Her 

daughter lives in Minneapolis and the rest of 

her family resides in Duluth. 

THE 


Person With ALS Educating Future 

Occupational Therapists 

D 

oug McDougall didn‘t hesitate when agreeing to talk to the 

University of North Dakota Occupational Therapy Class. 

For two hours he held the students‘ attention while he discussed 

how ALS has affected his life and how he continues to live in 

spite of the challenges of the disease. Cindy Janssen, OT 

professor, reported that in the course of the two hour lecture, 

Doug had the students laughing and crying. He truly made an 

impression on them. When the students asked Doug what they 

could do for him, 

because he had shared 

so much with them, 

Doug asked that they 

come to the Walk to 

Defeat ALS. In 

Grand Forks, North 

Dakota, on Saturday, 

April 24 th , most of the 

32 Occupational 

Therapy students 

attended the Walk in 

Doug and the OT students 

support of Doug. 

Adaptive Equipment Needed! 

f anyone has any small adaptive equipment that you are not using, 

I would you consider donating or returning the items to the Chapter? 

We have daily requests for items such as built up utensils, rocking T- 

knives, scoop plates, mobile arm supports, jar openers, milk carton 

holders, button hooks, dressing sticks, leg lifters, furniture risers, 

reachers, Handy bars, gas cap openers, key holders, writing and typing 

aids, card holders, book holders, adaptive scissors, and more. Thank 

you for your help in making sure that the items are available to others 

in the ALS community. 

Please send the items to our Chapter. If you have questions or 

concerns, or an OT or PT has recently recommended adaptive aids, 

contact Linda or Cheryl at the Chapter. 

H 

Leave a Legacy 

ave you ever considered ways in which you could leave a legacy to 

support The ALS Association in the future? By making a 

provision in your will or trust that gifts a portion of your estate to The 

ALS Association, you are doing just that. There is a perception that 

estate planning is only for the wealthy but that could not be further from 

the truth. Regardless of the value of your estate, written provisions in 

your will or trust will guarantee that your wishes are being fulfilled and 

your estate will support the areas that are most important to you. Setting 

up a bequest does not affect your cash flow or portfolio now and your 

assets remain in your control during your lifetime. In addition, your estate 

plan can be modified at any time if your circumstances change. 

You can read more about the various planned giving options on our 

website at: http://www.alsa.planyourlegacy.org/goals.php. If you‘d 

like to chat with someone in person, please contact Patti Tolo, VP of 

Development, 888-672-0484 or e-mail her at patti@alsmn.org. 

2 July/August 2010 www.alsmn.org

THE 


ALS MN/ND 

VOLUNTEER OPORTUNITIES 

Help a Person with ALS 

Arden Hills --------------------------------------- Once a week, 1-2 hrs—Visiting 

Brainerd ------------------------------------------ Every two weeks, 2 hrs—Clean 

Brooklyn Park ----------------------------------- Once a week, 2-3 hrs—Food preparation, water plants, chores, visiting 

Brooklyn Park ----------------------------------- Every two weeks, 1-2 hrs—Visiting 

Brooklyn Park ----------------------------------- Once a week, 2 hrs—Mowing lawn & taking out trash 

Champlin ----------------------------------------- Flexible on frequency—Clean, garden, yard work 

Cold Spring -------------------------------------- Twice a month, 2-3 hrs—Housecleaning, clean windows & closet, rearrange kitchen 

counters, visit while fishing 

Dayton --------------------------------------------- Once a week, 2-3 hrs—Clean & meal delivery 

Elmore--------------------------------------------- Once a week, 3 hrs—Clean, laundry, dog care, get mail, snow removal, other 

chores, visiting 

Hawley -------------------------------------------- Once a week, 2 hrs—Clean and snow removal 

Mound --------------------------------------------- Once a week, 3 hrs but open to every other week—Clean & meals 

North Minneapolis ----------------------------- 2-4 times per month, 3 hrs—Clean, laundry & visiting 

Shakopee ----------------------------------------- Once a week, 1 hr—Deliver meals 

Shoreview ---------------------------------------- Once a week, 2-3 hrs—Clean & mow lawn 

St. Cloud ----------------------------------------- 2-3 times a week, 1-2 hrs but flexible—Computer work 

White Bear Lake ------------------------------- Once a week, 2-3 hrs—Prepare lunch, visit, light cleaning & chores 

Durable Medical Equipment Assistant 

Help manage our equipment loan pool. This position includes data entry and preparing equipment to ship out. Located in Brooklyn 

Park. Volunteer needed 2-4 times per month on Wednesdays anytime between 10 a.m. and 2 p.m. 

Musician for Fargo Memorial Service 

Seeking a musician who plays the piano, guitar or harp to play soft and reflective music at A Day to Remember, a memorial service 

honoring those who have passed on due to ALS. Day/Time: Tuesday, July 20, 2010 from 3:30-6:00 p.m. Location: Fargo, ND. 

Walk Fundraising Committees 

Help plan Walk to Defeat ALS by serving on its fundraising committee. Committees work on securing walk sponsors, donated 

food, entertainment and publicity. Meet for one hour each month. 

Minneapolis --------- Weeknights from April – September 2010 

Sioux Falls --------- Weeknights from April – October 2010 

Walk to Defeat ALS 

Make the days of the Walk go smoothly by helping with T-shirt distribution, food, decorating, signs, face painting, advocacy and 

more. 

Fargo/Moorhead ---------- Saturday, August 21, 2010 

Rochester --------- Saturday, September 11, 2010 

Virginia ---------- Saturday, September 11, 2010 

St. Cloud ---------- Saturday, September 18, 2010 

Minneapolis ---------- Saturday, September 25, 2010 

New Volunteers 

The Association welcomes our new volunteers! These wonderful people joined the volunteer team between December 2, 2009 and 

June 1, 2010. (If your name was accidentally omitted, please accept our apologies and inform us.) 

Courtney Albertson 

Tanya Albertson 

Scott Amb 

Steve Arsenault 

Kelsey Aspaas 

Bridget Baumgartner 

Andrew Bethke 

Kelsey Bigbee 

Kevin Boegeman 

Paul Bourque 

Mary Bucher 

Tony Deharnis 

Peter Douglas 

Josh Dvirnak 

Denise Erickson 

Patty Erickson 

Jackie Evans 

Teresa Evans 

Angela Gagliardi 

Ryan Gracheck 

Chris Handlos 

Andy Hanse 

Peggy Harzinski 

Katie Hascall 

Jaclyn Heim 

Rebecca Hilley 

Craig Hom 

Karen Hopson 

Judy Hoskin 

Gary Huwe 

Jeannine Kemp 

Scott Kjar 

Jake Kjellberg 

Shanna Konesky 

Jena Kowalski 

Heather LeMoine 

Sandy Lodermeier 

Steve Mahan 

Susan McDougall 

Pete Mellin 

Ryan Mihalak 

Anna Moore 

Dylan Moore 

Kelsey Novak 

Taylor Novak 

Brody Olson 

Denise Pierson 

Shannon Reed 

Jack Reimers 

Quinn Renfandt 

Josh Ressler 

Elise Roberts 

Sarah Roberts 

Margherita Romano 

Jason Rutherglen 

Pat Salstrand 

Rian Schermerhorn 

Shirley Schlabsz 

Emily Schultz 

Andy Schweigert 

Jeremy Simmons 

McKayla Small 

Jordan Smith 

Douglas J. Solem 

Christian Sovak 

Stephanie Spencer 

Derek Steiner 

Pat Thomas 

Wayne Wensmann 

Sierra Wood 

Laura Zerby 

To volunteer or to receive a volunteer, please contact Stephanie at 888-672-0484, or at stephanie@alsmn.org 

www.alsnd.org 

July/August 2010 

3

MN/ND 


THE 


CHAPTER’S PROGRAMS 

HRBEK-SING COMMUNICATION AND 

ASSISTIVE DEVICE PROGRAM 

The Hrbek-Sing Communication and Assistive Device Program is 

a resource for augmentative communication, computer access and 

electronic aids to daily living equipment. This equipment is available 

free of charge to Minnesota residents diagnosed with ALS. To apply to 

the program, please call Cheryl or Linda at the Chapter office (888-672- 

0484) and they will send you an application form. 

JACK NORTON FAMILY RESPITE CARE 

PROGRAM 

The Jack Norton Family Respite Care Program provides much 

needed respite to full-time family caregivers but more importantly, it 

assures that PALS are well cared for when their family member is away. 

The Minnesota/North Dakota Chapter will pay for up to 18 hours/ 

month of respite care for a full-time primary caregiver living in the 

home. There is a one-page application form to complete and return to 

the Chapter. To learn more about the program or participating in it, 

please contact Jennifer or Anne at the Chapter office (888-672-0484). 

DURABLE MEDICAL EQUIPMENT 

LOAN POOL 

If your physician and/or therapist tell you that you would benefit from 

medical equipment (e.g., canes, walkers, and wheelchairs) and your 

insurance will not cover the expense, we may have these items in our 

loan pool located at several locations throughout our service area. Call 

Cheryl or Linda at the Chapter office (888-672-0484) and they will 

check on an item for you. 

To donate equipment to the ALS loan pool: Please contact the 

Chapter office (888-672-0484). Your donation is tax deductible and the 

equipment you donate will help another person living with ALS. PALS 

and/or their families and friends have donated the items in our loan 

pool and we are grateful for their generous contributions. 

VOLUNTEER PROGRAM 

Volunteers help persons with ALS (PALS) with daily tasks including 

cleaning, errands, gardening, household chores, light maintenance, 

meals, pet care, scrap booking, snow removal, yard work, or visiting. 

Each volunteer goes through a thorough screening process. Availability 

ranges from weekly to monthly visits. For more information, request a 

DVD about the volunteer program. Request a volunteer by contacting 

Stephanie at the Chapter office (888-672-0484). We are also interested 

in hearing from anyone who would like to become a Chapter volunteer. 

If you’re interested in contributing financially to any of the above programs, funds have been 

established for each. You can designate your donations in whole or part to any of the programs 

and your donation will go 100 percent to that program. Donations can also be designated 

to research. Please contact Patti Tolo, VP of Development at The ALS Association, 

Minnesota/North Dakota Chapter, with any questions on how to designate your contributions 

888-672-0484 or e-mail her at patti@alsmn.org. 

ALS SPECIALTY CLINICS IN 

OUR SERVICE AREA 

HENNEPIN FACULTY ASSOCIATES (HFA) 

825 Eighth St S, Ste 250, Minneapolis, MN 55404 

612-347-5224 *Nationally certified ALS center 

Medical Director: Dr. Ezgi Tiryaki 

Clinic Coordinator: Mary Helen Hoffman, RN 

MAYO CLINIC 

200 First St SW, Rochester, MN 55905. 507-538-1037 

*Nationally certified ALS center 

Medical Director: Dr. Eric Sorenson 

Clinic Coordinator: Julie Hovda, RN 

MERITCARE NEUROSCIENCE 

Meritcare Coordinated Treatment Center 

736 Broadway, Fargo, ND 58122. 1-800-437-4010 ext. 4055 

Medical Director: Dr. Susan Scarberry 

ALS Nurse Coordinator: Peggy Mondry, RN 

Physician Assistant: Jamie Brown, PA-C 

UNIVERSITY of MINNESOTA MEDICAL CENTER, 

FAIRVIEW 

420 Delaware St. SE, Minneapolis, MN 55455. 612-624-7134 

Medical Director: Dr. John Day 

Clinic Coordinator: Leslie Phidd, RN 

Community Outreach Coordinator: Kelly Schuna, 612- 626-4823 

CURRENT ALS RESEARCH STUDIES IN 

MINNESOTA 

Hennepin Faculty Associates (HFA)/Berman Center 

he HFA-ALS Center is currently enrolling participants for 

T the Ceftriaxone trial. The purpose of this study is to 

evaluate the safety and effect of ceftriaxone treatment in ALS. It 

is known that motor neurons die in the brains and spinal cords of 

people with ALS and increased levels of a chemical called 

glutamate may be related to this process. Ceftriaxone may 

increase the level of a protein that decreases glutamate levels near 

nerves and may protect motor neurons from injury. Ceftriaxone 

is approved by the FDA for the treatment of bacterial infections 

and its use for the treatment of ALS is investigational. 600 people 

are expected to take part in this research nationwide and about 10 

people are expected to take part at HFA. For further information 

on this trial as well as on upcoming trials in 2010 please contact 

Cindy Rohde, RN, ALS research coordinator, at 612-341-7923. 

Enrollment is also open for a trial which is designed to improve 

the assessment of changes in cognition that occur in the presence 

of ALS. Approximately 305 people will take part in this research 

nationwide, and about 20 people are expected to take part at the 

HFA-ALS Clinic. If you are interested in this trial please contact 

Mary Helen Hoffman, RN, Nurse Coordinator of the HFA- 

ALS Center at 612-347-6450. 

(Continued on page 13) 


THE 


WITH OUR DEEPEST SYMPATHY 

We send our sympathy to the families and friends of the following who 

recently lost their battle with ALS: 

Eldon Anderson 

Audrey Beuckens 

Norma Carlson 

Leslie Dodd 

Dale Durant 

Patrick Flaherty 

Carol Gassama 

Charles Heeren 

Toby Horst 

Bob James 

Jeffrey Kuennen 

Donald McCloskey 

Marjorie Sanders 

Arnold Schmitz 

Helle Silpala 

Wade Swenson 

Raymond Stevermer 

Daryl Thorson 

Mark Wheeler 

Although it is difficult today to see beyond the sorrow, 

May looking back in memory help comfort you tomorrow. 

-Author Unknown 

Our apologies if we neglected to mention a name, please know that all PALS 

and their families are in our thoughts and prayers. 

SUPPORT GROUP SCHEDULES & UPDATES 

Due to unpredictable weather, location changes, facilitator illness, holidays, and/or 

other possibilities, we ask that you check either with the Chapter office, affiliated 

clinic, or support group facilitator regarding whether or not the group will be held that 

day or evening. 

METRO AREA ALS SUPPORT GROUPS 

Hennepin Faculty Associates (Minneapolis, MN) 

Fourth Thursday of every month from 1:00-3:00 p.m. Parkside 

Professional Building 825 S 8th St, Suite 506. A pizza lunch is served 

beginning at 12:30 p.m. Park in the ramp next to the Parkside 

Professional Center (enter on S 9th St). Bring your parking ticket to the 

meeting to be validated for $2.00 rate. 

For questions or to RSVP contact Anne Supplee at the Chapter 

888-672-0484 or at anne@alsmn.org. 

DATES: 

Thursday, July 22—Walk to Defeat ALS, Kristina Hedberg 

Thursday, August 26—Open discussion 

VA—sponsored group for veterans 

and their family members 

Third Tuesday of every month. 10:30 a.m.-12 noon. For questions or 

to RSVP contact Erica Johnsen, VA Spinal Cord Injury and Disorders 

outpatient clinic at 612-629-7005. 

MDA—Sponsored—University of Minnesota, 

Fairview (Minneapolis, MN) 

Second Tuesday of every month from 12:30-2:30 p.m. Phillip 

Wangensteen Building, 516 Delaware St SE, Room 12-100 (12th Floor 

Conference Room). For questions or to RSVP contact Tiffany 

Landkammer, MDA, at 952-697-3251. A light lunch will be served 

starting at 12:15 p.m. 

MDA—Sponsored/Children/Youth of ALS Patients 

(Minneapolis, MN) 

Third Thursday of every month from 4:30-6:00 p.m. 717 Delaware 

Street SE, Room 303 on the U of MN Campus. The group (ages 10-17) 

is facilitated by U of MN Pediatric Neuropsychologist, Dr. Christopher 

Boys. For questions or to RSVP contact Tiffany Landkammer, MDA, 

at 952-697-3251. 

DATES: 

Wednesday, July 14—Forgiveness 

Wednesday, August 11—Open discussion 

www.alsnd.org 


BEREAVEMENT GROUP (ST. PAUL, MN) 

Second Wednesday of every month from 4:00-5:30 p.m. St. 

Mary‘s Episcopal Church. 1895 Laurel Avenue, St. Paul. Youth 

Room, 2nd Floor. Free street parking. Bereavement support 

group is for anyone who has experienced the death of a loved 

one due to ALS. 

For questions or to RSVP contact Anne Supplee at the Chapter 

office 888-672-0484 or at anne@alsmn.org. 

GREATER MN AREA ALS SUPPORT GROUPS 

SMDC—Sponsored Support Group (Duluth, MN) 

NOTE TIME & DATE CHANGE 

Fourth Tuesday of every month from 1:00-2:30 p.m. First Street Clinic, 

420 East 1st Street, Aurora Room 3rd floor. Parking ramp is on 1st St on 

the west side of the building. Skyway to building is on 2nd level. For 

questions or to RSVP contact Christine Raso-Talley at 

218-786-5364 or crasotalley@smdc.org. 

DATES: Tuesday, July 27 and Tuesday, August 24 

Grand Rapids Area (Grand Rapids, MN) 

Second Tuesday of every month from 1:00-2:30 p.m. Grand Itasca 

Clinic and Hospital, Meeting Room A, 1601 Golf Course Rd. For 

questions or to RSVP contact Gretchen Pickeral at 218-259-6874 or 

lilmargret@gmail.com. 

DATES: Tuesday, July 13—Walk to Defeat ALS, Kristina Hedberg 

Tuesday, August 10—The Latest in ALS Research, 

Lisa Kronk, RN 

Mankato Support Group (Mankato, MN) 

Last Tuesday of every month from 3:30-5:00 p.m. Autumn Grace Assisted 

Living, 118 Raven Court. For questions or to RSVP contact 

Jennifer at the Chapter at 888-672-0484 or jennifer@alsmn.org. 

DATES: Tuesday, July 27—TBD 

Tuesday, August 31—The Latest in ALS Research, 

Lisa Kronk, RN 

Mayo Clinic—Southeastern MN (Rochester, MN) 

Meets on ALS clinic days from 11:30 a.m.-1:00 p.m. Mayo Medical Center; 

15th Floor Seminar Room in the Mayo Building. This group is 

geared toward same-day clinic patients. A light lunch is served. For 

questions or to RSVP please call 507-538-1037. 

West Central MN Support Group (Montevideo, MN) 

First Tuesday of every month from 3:30-5:00 pm. Chippewa County 

Montevideo Hospital, 824 North 11 th Street, Conference Room 122. 

For questions or to RSVP contact Stephanie Strand, LSW at 320-444- 

2578, or stephstrand@yahoo.com. 

DATES: Tuesday, July 6—This meeting will break into two groups for 

open discussion between persons with ALS, and family 

members/caregivers of person with ALS 

Tuesday, August 3—Advance Directives, Gail Radke, MN River 

Area Agency on Aging 

Continued on page 6 


5

MN/ND 

Continued from page 5 


Rochester Area Support Group (Rochester, MN) 

June, July & August meetings are cancelled for the Summer 

If you have questions, please contact Anne at 888-612-0484 or 

anne@alsmn.org. 

St. Cloud Support Group (St. Cloud, MN) 

Third Tuesday of every month from 12:30-2:30 p.m. St. Michael's 

Catholic Church, 1036 County Road 4 (Veteran's Drive). Meet in the 

library. A pizza lunch is served at 12:15 p.m. For questions or to RSVP 

contact Lee Zurek, RN, at 612-558-1767, or leezurek56@gmail.com. 

DATES: Tuesday, July 20—Fatigue Management, Cheryl Meyers, OT, 

Chapter Patient Services Coordinator 

Tuesday, August 17—Open Discussion 

NORTH DAKOTA ALS SUPPORT GROUPS 

Bismarck Area Support Group (Bismarck, ND) 

First Wednesday of every month. 7:00-8:30 p.m. Medcenter One 

Outpatient Services Center at 414 N 7th Street (corner of 7th and 

Rosser). Medical Staff Conference Room #2, first floor. Parking is in 

the patient parking lot adjacent to the building. For questions or to 

RSVP contact Gale Roth, RN at 701-400-3802 or at 

cgcsr@bis.midco.net. 

DATES: Wed., July 7—Fatigue Management, Cheryl Meyers, OT, 

Chapter Patient Services Coordinator 

Wed., August 4—Chapter Programs and Services, Linda 

Lorentzen, Chapter Patient Services Director 

MDA—Sponsored/ALS Support Group (Fargo, ND) 

Second Tuesday of every month starting at 6:30 p.m. (meetings 

generally last two hours). Patients, families, friends and caregivers are all 

welcome. Location: IdeaOne Community Room. 3312 42nd Street 

South, Suite 100. For questions or to RSVP contact Crystal Coster 

Larson at MDA at 701-235-1988 or at Clarson@mdausa.org. 

WISCONSIN ALS SUPPORT GROUP 

Northwestern Wisconsin (Chippewa Falls, WI) 

Second Thursday of every month from 3:00-5:00 p.m. Chippewa Valley 

Bible Church, 531 East South Avenue. Building is wheelchair accessible. 

Patients, families, friends, and caregivers are welcome. The second hour, 

the group breaks into separate sessions (patients and families/friends/ 

caregivers). Light refreshments are served. For questions or to RSVP 

contact Deb Erickson, LPN, at 715-271-7257. 

“Integrity is our creed. 

Customer satisfaction is our business.” 

JCAHO accredited, Members of MED GROUP, 

AAHomecare, MAMES, NRRTS and NCART 

We provide all your 

Home Medical Equipment & Supplies 

Visit one of our three convenient locations 

9401 Winnetka Ave N, Brooklyn Park, MN 55445 P:763-255-3800 

1630 Anderson Ave, Ste 200, Buffalo, MN 55313 P:763-684-1778 

440 Great Oak Dr, Waite Park, MN 55287 P:320-259-5900 

www.reliamed.com reliamed@reliamed.com 

T 

ITEMS FOR SALE 

THE 


COMMUNITY FUNDRAISERS 

If you are planning a family event and need additional information on how to do this, 

please contact Sue Spalding, Executive Director at the Chapter office at 

sue@alsmn.org or 888-672-0484. 

Employee Giving Campaigns 

here are many ways to give to The ALS Association, 

Minnesota/North Dakota Chapter and one of the easiest is 

through workplace giving campaigns. During the summer and 

fall months, many companies begin their annual employee giving 

campaigns, where employees can donate 

funds to the charity of their choice 

through payroll deductions. This year 

our Chapter is pleased to be included in 

the Combined Federal Campaigns of 

the Red River Valley and the Minot 

Area. This is the first year that we have been included in the 

Minot Area Campaign. We are also proud 

members of Community Health 

Charities in Minnesota. Community 

Health Charities is offered in hundreds of 

companies throughout the state and can 

easily be added to your company if it‘s not 

available. You can also designate donations to our Chapter 

through United Way in Minnesota or the Combined Federal 

Campaign. Please be sure to designate your donation to The ALS 

Association, Minnesota Chapter (our legal business name) and the 

donation will come to us. Last year more than 3% of our income 

came through employee giving campaigns. We hope to see that 

grow in the future! 

Raise awareness by wearing a Fighting Lou Gehrig's 

Disease Wristband 

Contact Lourdes at the Chapter office, 

888-672-0484 or lourdes@alsmn.org 

to order wristbands now! 

Cost is $1 each plus shipping. 

2007 Rollx Conversion Chrysler Town & Country van. Power doors 

(side) and in-floor ramp with remote. 10-inch lowered floor. EZ lock 

power tie-downs in both the passenger and driver position. 25,500 

miles. Asking $31,500. Call Sally at 763- 389-0542. 

2000 Braun Entervan Conversion Chrysler Town and Country 

LX wheelchair transport van. 3.3 V6 Engine, rebuilt transmission. 

Power side door and fold down ramp. Transport chair and tie 

downs, extra passenger seat. 121,000 miles. Tires 80%. Asking 

$10,500. Call Curt at 507-210-3245. 

2005 Toyota Sienna Van with Braun ramp conversion. Remote 

activation availability, power doors, EZ-lock auto tie down in passenger 

position. Great condition. 15,525 miles. Asking $ 37,000. Call Anne at 

612-968-6046. 

If you would like to advertise a van or medical equipment in the newsletter, 

please call the Chapter office. 


THE 


MEMORIALS, TRIBUTES & CONTRIBUTIONS 

The following list includes contributions made April 1 to May 31, 2010 

MEMORIALS 

In Memory of 

Debbie Bense 

Anonymous donor 

Bill Bense 

Linda Bettison 

Myrla Bower 

Sandra Burtness 

Joyce Holmgren 

Virginia Hoover 

Edna Karjalahti 

Lora Knafla 

Verna Koep 

Helen Larson 

John & Marilyn Lee 

Joyce Nuernberg 

Susan Pawelk 

Brooke Peterson 

John Pike 

Krista Quade 

Ann Quinlivan 

Savino Ranallo 

Lola Schenk 

Eva Sova 

Laura Stanley 

DeWayne Stenger 

Beatta Swanson 

Millie Teders 

Lowell Van Berkom 

Karen Vollen 

Fred Wippich 

Regina Brekke 

Hazelann Lucht 

Robert & Rita Rivard 

Clara Bunk 

Dale & Mert Olson 

David Burkhartzmeyer 

Shirley Burkhartzmeyer 

Donna Quam 

Catherine Byers 

Barbara Gay 

Pearl Coleman 

AFSCME Council 5 

AFSCME 

Colleen Riley 

Leallen Croatt 

Robert Blong 

Carolyn Bodensteiner 

Mairi Doerr 

Evan Downes 

Jacqueline Frana 

Dorothy Gargaro 

Jamie & Pam Garvey 

James Knutson 

Arlene Luzum 

Mracek Plbg., Htg. & 

Electric 

DeAnn Purcelli 

Katrina Rowe 

Bob & Wanda Sanders 

Tari Sherry 

Barbara Skierecki 

The Church of St. Pius V 

Robert Danzl 

Janice Danzl 

Lynnette Strong 

William DuChene 

Laura Burkhartzmeyer 

Gregory Caron 

Deborah Glende 

Terry & Katherine 

Kalow 

Sharon Moritz 

Lorraine Mullenmeister 

Lawrence & Julie 

Perron 

James Smisek 

Kathleen Smisek 

Steve & Jann Zabel 


Frances Vanden 

Broecke 

Sandra Gaffney 

Frank Schulwolf 

William Gluth 

Denise Johansen 

Kay Hanson 

Linda Klocek 

Ikram Haque 

Saadia Haque 

Alan Hill 

Debbie Crooks-Hill 

Robert James 

Suzanne Blank 

Christine Johnson 

Robert & Irene 

Lundberg 

Sauter Fairchild, Inc. 

Marilyn Johnson 

Edward Johnson 

Bertha Kadlec 

Marilyn Noga 

Rolland Kamp 

Robert & Barbara 

Kedrowski 

Diane Kaplan 

Tom & Bonnie 

Richards 

Kathleen Kedrowski 

Jane Chronister 

Brenda Cich 

Pamela Gerads 

Valerie Jones & Steven 

Kurtz 

Robert & Barbara 

Kedrowski 

Gina McDermott 

Linda Ramler 

Marilyn Kittleson 

Carlton Kittleson 

Lyle Kohl 

Bonnie Kohl 

James Little 

Joe and Anne Elsinger 

Jeffrey Maruska 

Janelle Abraham 

Anonymous Donors 

Jacqueline Arnold 

Linda Arnold 

Connie Arnold 

Melissa Christen 

Jim & Marilyn Counter 

Dell & Audrey 

Hemmingsen 

Amanda Hove 

Teresa Klinkhammer 

Dorothymae Le Pier 

Betty Le Pier 

Carol Lenes 

JoLee Maxwell 

Janell Oesau 

Marlan & Marge Olson 

Donna Rystad 

Marcia Sandahl 

James and Marie Scott 

Jeanette Stout 

Sharon Trandem 

Sandra Viktora 

Linda Widrig 

Tom McCormick 

Marlene Smrecek 

Darlene McGrath 

Joe & Anne Elsinger 

David Miller 

Rosemary Martin 

Janet Robinson 

Judy Moline 

Breakfast Exchange 

Club 

Kirsten Dawson 

Harlow & Dolly Grimes 

Steven & Marjorie Herr 

Patricia Karich 

Robert Komac 

Mary Linn 

Michele Maki 

James & Kathleen 

Metry 

Gregory Murphy 

Erin Parrish 

C. Lynn Rising 

Michael Ryan 

Phyllis Trippel 

Sean Breanndan Moore 

Mary Moore 

Scott Munter 

Anonymous Donor 

John Finch 

Suellen Gertken 

Suellen Gertken 

Kathy Hammill 

Jodee Hinnenkamp 

Judith Kadlec 

Lori Krawczyk 

Scott Lacher 

Margaret Munter 

Bernie Nierenhausen 

Terry Price 

Patricia Salay 

Teresa Sharp 

Gary Strandemo 

Ulteig Company 

Linda Volz 

Clarence Nau 

Nancy Andersen 

Margaret Hudson 

Sally Nau 

Betty Olson 

Beth Haverly- 

Raymakers 

LeRoy Piepkorn 

Lorie Bouget 

David Sheets 

Nicole Duncan 

Bill Steele 

Warren and Carol 

Anondson 

Mary Lillquist 

Leah Steele 

Wade Swenson 

Monica Schultz 

James Tansey 

Maureen Tansey 

Theresa Tsai 

Leo Tsai 

LeRoy Uecker 

Linda Klocek 

Douglas Voeller 

David & Norma Voeller 

Jenny Webskowski 

Joy Springborg 

Jerome & Mark Wilczek 

Tim Becker 

Betty Bolduc 

Rita Boulay 

Nancy Fretz 

Michelle Harrington 

Gregg Hartos 

Patrick Plonski & Judy 

Hawkinson 

Alan & Kristina Hebing 

Bradly & Therese 

Henriksen 

Lee & Janice Hoffman 

Marcia Kelash 

Carol & Maurice 

Klingele 

Robert & Marsha Koch 

Bradley & Kathy Larson 

Charles Meister 

David & Carmen Morris 

Lynn Olson 

The Phelps Family 

Linda Scherer 

Frances Scott 

Terryl Truesdell 

Gloria Voskuil 

Rita Wilczek 

Dawn Wilson 

Shannon Wright 

Hollis Wunder 

Thane Malmstone, Jr. 

Alphonse Yamry 

Annette Gasser-Great 

River Bowling Group 

Larry Young 


Linda Klocek 

TRIBUTES 

In Honor of 

John Christianson 

Thomas Corneil 

Dawn Janes 

Myron & Cheryle 

Larson 

Steven Micke 

Minnesota Ind. 

Insurance Agents 

Wiser Insurance 

Agency 

Valerie Wojtysiak 

Joanne Decker 

Mary Pat Anderson 

Scott Evers 

Bradley & Suellen 

Karow 

Mike J Hooker 

Joan Honsa 

Scott LeDoux 

Trust Company 

Construction 

John Mamer 

Kathleen Stoddart 

Suzanna Schlesinger 

Kitty Widdes 

ANNUAL APPEAL 

DONATIONS 

2010 JANUARY APPEAL 

In Memory of 

Father & Sister 

Margaret Woods 

Michael Morrissey 

Mark Flatten 

Gorden Pederson 

Diane Pederson 

David Sheets 

Khrustenn Asariah 

Shirley Ylinen 

Jim Ylinen 

Misc. Donations 

Steven Ball 

Ruby Beebe 

Dale Gates 

Duane Krogstad 

George Lauzon 

Walter Meyers 

Don Peters 

2010 MARCH APPEAL 

In Honor of 

Michael Baumgardner 

Gary Baumgardner 

Rodney Brustad 

Jason Kissel 

(Continued on page 8) 

www.alsnd.org 


7

MN/ND 


THE 


(Continued from page 7) 

Charles Heeren 

Lester Swenson 

James Lundquist 

James Lundquist 

Bob Stimson 

Phillip Saari 

John Vleck 

James Vleck 

In Memory of 

Cathy Baumgartner 

Carrie Baumgartner 

Chillman 

Audrey Beuckens 

Lynette Bruns 

Ken Clark 

Jean Clark 

Robert C. Emerson 

Marlene Emerson 

Donald R. Gardner 

Laurel Caruthers 

Dennis Grendahl 

Kathleen Grendahl 

Rolland Kamp 

Sharon Kamp 

Paula Leary 

Ellen Kelley 

Caroline Lemieux 

Karen Sandberg 

Chuck Nalipinski 

Elaine Nalipinski 

Marlene Ordorff 

Elizabeth Herman 

Shirley Reistad 

Harold Reistad 

Burdell Smith 

Siri Smith 

Kathryn Steen (Kaki) 

Joyce Steen 

Paul Swanson 

Susan Swanson 

Jean Willer 

Geraldine Badinger 

Hollis Wunder 

Thane Malmstone 


David Arff 

Barry Badinger 

Thomas Bougham 

Adrian Burdick 

Randy Clarksean 

Mary Connolly 

Diane Considine 

Jasper Daube 

Marilyn David 

Gina Dilly 

Karl Duemke 

Thomas Eischens 

David Flaherty 


Ray Flicek 

Richard Flurer 

Arlene Freeman 

John Gabor 

Arthur Haas 

Arvid Haas 

Kerry Holloway 

Susan Holmen 

Kirk Holmgren 

Alice Kalash 

Donald Kjar 

Linda Klocek 

Lee Kolquist 

Dwight Krueger 

Gordon Kuelbs 

Robert Leafgren 

Scott LeDoux 

Jeff Lindemann 

Wayne Lommel 

Frank Melton 

Tom Moore 

Bonnie Nohl 

John Paisley 

Myrtle Pouliot 

Carolyn Rendler 

Rosemarie Riskevich 

Donald Robbins 

Stephen Ryan 

Sherman Sanders 

Charles Schroeder 

Elda Schroeder 

Barbara Shepherd 

Norman Sladek 

Michael Slusser 

Gary Solmonson 

David Sorlie 

Doryce Surma 

Ella Tempel 

Dolores Timmer 

Marian Torgeson 

Robert Valencour 

Loren Weisbrod 

Margaret Wenner 

Mary Wesolowski 

Christopher Weyer 

Herbert Wilkerson 

David Woldt 

John Wolff 

Reba Young 

Carl Zuck 

2010 APRIL APPEAL 

In Honor of 

Judy Behr Emmings 

Virgil Johnson 

Jack Gabor 

John Gabor 

Kelly Lemna 

Bonita Wellentin 

Mom and Brother 

Eugene Maurer 

Scott Stafne 

Christopher Weyer 

In Memory of 

Ruth Broden 

Jim Broden 

Larry Busching 

Jon Vollendorf 

James E. Ellis 

Jim Linde-Ellis 

Barbara A. Haas 

Arvid Haas 

Janice Holmes 

Barb Gail 

Gerald M. Jackson 

Darleen Jackson 

Carrie Lemieux 

Dennis Weatherman 

Dick Lickteig 

Steven Haeny 

Jacquelyn Neal 

Marian Torgeson 

Patti Nemec 

Joseph Adelmeyer 

Thomas Rendler 

Carolyn Rendler 

Margie Sanford 

Beverly Windsor 

Dolores Stellick 

Roland Stellick 

Kenny Sudeen 

Ronald Sundeen 

Lawrence Timmer 

Dolores Timmer 

Mark Wilczek 

Noel Olson 

Jean Willer 

Delores Wanner 

Hollis Wunder 

Thane Malmstone 


Darlene Anderson 

David Arff 

Tony Bauer 

Marjorie Bjorklund 

Deanna Blomgren 

Cecelia Cruickshank 

Larry Duininck 

Karen Fischer 

David Flaherty 

Louise Griver 

Jacqueline Grove 

Jerold Hallin 

Cleon Heusinkveld 

Roger Kable 

A. Kabus 

Carol Kimmes 

Thomas Kinney 

Hubert Klocek 

Leroy Larson 

Wayne Lynum 

Gladys Marzahn 

Bob Masters 

Edward McCall 

Elaine McDermott 

Karen Moe 

Scott Nessa 

Lael Nord 

Jim Powell 

Dean Schwanke 

Doreen Smoley 

David Sorlie 

Virgene Stauffer 

Dennis Stiles 

Duane Struck 

Joy Waggoner 

Helen Weides 

William Whitted 

GENERAL 

CONTRIBUTIONS 

Company Matches 

Bank of the West 

Best Buy PAC Match 

Program 

GRACO Company 

Microsoft Corporation 

Xcel Energy 

Employee Giving 

Campaigns 

3M General Offices 

Blue Cross Blue Shield of 

Minnesota 

Ceridian 

GRACO Company 

IBM 

Microsoft Corporation 

Raytheon Charitable 

Giving 

Target Corporation 

Thrivent Financial for 

Lutherans 

UPS 

Wells Fargo Community 

Support Campaign 

Xcel Energy 

Individual Donations 

via Employee Giving 

Campaigns 

Eric Albrecht 


Norbert Biderman 

Bradford Bruggemann 

Mark Buermann 

Terri Carrick 

Arlene Dahlberg 

Maria Delmoro-Hultman 

Susan Dentinger 

Christine Groetken 

Kathleen Lamphere 

Bradley Lundberg 

Amanda McLeod 

Sarah Moore 

Scott Nelson 

Steven Noble 

Adrian Orth 

Ron Ortloff 

Karen Port 

Raymond Ridl 

Kevin Schafer 

John Schleppenbach 

Lenny Sharpe 

Carisa Stangler 

Daniel Taus 

Andrea Weatherly 

Michael Westhouse 

Cynthia Zimmerman 

Federated Campaign 

Community Health 

Charities Minnesota 

Gibbon Combined 

Charities 

CFC of the Red River 

Valley 

Truist (formerly United 

eWay) 

Contributions 

AgeWell Home Care 

American Physical 

Therapy Assoc. 

Lauren Amick 


Association of Residential 

Resources in Minnesota 

Autumn Grace Assisted 

Living, Mankato 

Church of St. Michael, 

St. Cloud 

Herbert Davis & Retha 

Dooley 

Anton Dmytrenko 

Stacey Langford 

Julie Lasics Parker 

Clifford & Ruth Marquardt 

MedCenter One, 

Bismarck, ND 

Gary Nelson 

Lois Neubert 

Marilyn Noga 

William Noleen 

Peggi Sawyer 

St. Mary’s Episcopal 

Church, St. Paul 

Tina Tzaperas 

Kimberly Wick 

Linda Williamson 

Donated Equipment 

Bill Bense 

Jim Bougie 

Mark & Vicky Brunsvold 

Willard Carlson 

Lloyd Forry 

Estate of Tonya Foss 

Alice Isenberg 

Jane Mattson 

Susan Miller 

Margaret Munter 

Emil Netzer 

Sylvia Raymond 

John Vleck 

We gratefully acknowledge the people and groups who generously made 

memorial gifts and contributions to our chapter since the last newsletter. 

Monies received support patient services, public awareness and research 

into the causes and a cure for ALS. Upon receipt of these gifts, an 

acknowledgement of the gift is sent to the person or family designated. 

All contributions are tax-deductible. If we have omitted any names, 

please notify us. Thank you for caring. 


THE 



T 

FANTASTIC FUNDRAISERS 

2010 WALK TO DEFEAT ALS TM 

his marks the tenth year that our Chapter has had Walk to Defeat ALS events. Please join us for 

another successful year as we Walk to Defeat ALS. 

Spring Walks in Mankato, Grand Forks, Bismarck and Minot are now complete! Over $165,000 was 

raised through these Walks, and we continue to receive donations in the mail. Please keep checking the 

Walk website for specific Walk team and individual totals (www.walktodefeatals.org, select the state 

and city). 

Spring Walk to Defeat ALS Fundraising Totals 

Mankato ------------------------ $46,239 Grand Forks ------------------- $23,153 

Bismarck ----------------------- $35,213 Minot --------------------------- $61,049 

2010 Fall Walk Celebration Dates/Walk Dates 

Fargo/Moorhead Walk to Defeat ALS .......................................................... Saturday, August 21 

Rochester Walk Celebration ............ Wednesday, July 14 Rochester Walk to Defeat ALS ............ Saturday, September 11 

Iron Range Walk Celebration .......... Thursday, July 1 Iron Range Walk to Defeat ALS .......... Saturday, September 11 

St. Cloud Walk Celebration ............. Wednesday, July 21 St. Cloud Walk to Defeat ALS ............. Saturday, September 18 

Minneapolis Walk Celebration ........ Sunday, August 1 Minneapolis Walk to Defeat ALS ........ Saturday, September 25 

Sioux Falls Walk Celebration .......... Tuesday, August 31 Sioux Falls Walk to Defeat ALS .......... Saturday, October 23 

KOLAR TOYOTA ALS WALLEYE TOURNAMENT 

T he 15th Annual Kolar Toyota ALS Walleye Tournament was held on Saturday, June 5, 

2010 on Island Lake, Duluth, MN. Determined walleye anglers fished in fierce 

competition. There were nearly 300 anglers total in 145 boats, hundreds of volunteers and 

guests joining us to raise $118,000 for the Minnesota/North Dakota Chapter. The anglers 

joined celebrity hosts Kent Hrbek, Jim Johnson and Darby Hendrickson. The largest basket of 

walleye (13.67 lbs.) went to the same winning team as in 2009: Jason Schrupp, of Vergas, 

Minnesota and Josh Fankhanel, of Moorhead, Minnesota. Second place went to Wayne and 

Steve Reynolds, both of Duluth, with a total weight of 11.50 lbs. Troy Skorich and Chris 

Edquist, both of Superior, Wisconsin, came in third place with a basket weighing 10.58 lbs. 

Sponsored by Rassat Outdoor Group, the Big Walleye Bonanza honors the biggest fish. This 

year‘s honors went to Shrupp and Fankhanel with a fish weighing in at 5.92 lbs. 

Anglers joined hundreds of attendees at the banquet ceremonies held at Skyline Party & Game Zone in Duluth. A live and silent auction, 

dinner and awards ceremony rounded out the evening. The winners of the five grand prizes of a $1,000 Marine General gift card were 

Greg Johnson (Ironwood, Michigan), Jesse Stokke (Sioux Falls, South Dakota), Tony DeVito (Chaska, Minnesota), Tom Ditter (Wayzata, 

Minnesota) and Scott Ridgely (Duluth, Minnesota). The 3 rd Annual Kevin Kolquist Most Valuable Participant Award was also 

awarded. Kevin and his family have planned and carried out the Walleye Tournament since it started 15 years ago. Kevin died of ALS in 

April, 2007. The award was presented to volunteer and angler Brian Haedrich. Brian consistently is behind the scenes making sure all 

aspects of the tournament are ready for the anglers. He participates on the committee, often volunteering for jobs when someone is 

needed. He always does whatever is necessary to make the event successful year after year. Congratulations, Brian! 

We want to give a huge thanks to our sponsors: 

Kolar Toyota American Family Insurance Amsoil, Inc. Art Dimension Budweiser Carrier Coca Cola 

Country Inn and Suites Creative Threads Inc. Famous Dave’s Fox Sports North Hartel’s-DBJ Disposal I-Gogs J&B Wholesale 

95 KQDS Lac Seul Evergreen Lodge Lamar Outdoor Lund Boats Marine General McDonald’s Mellin Promotions 

Mercury Marine Minnesota Twins Nahan Printing National Audio & Visual Phillips Rassat Outdoor Group RJ’s Sport & Cycle 

Skyline Party & Game Zone SMDC St. Luke’s Stewart Taylor Printing Super One Foods Uncle Phil’s WDIO 

Wheaties 

A huge Thank You goes to our committee members, volunteers and all the participants for making this event so successful. 

www.alsnd.org 


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MN/ND 


THE 


LARRY SING MEMORIAL ALS GOLF CLASSIC 

T he 16th Annual Larry Sing Memorial ALS Golf Classic takes place in Fargo and Moorhead on Monday, August 23. 

Our participants will be playing on two great courses: Edgewood 

Golf Course in Fargo, and Moorhead Country Club in Moorhead. The 

event is targeted for the agricultural community, which Larry worked in 

for many years. For additional information regarding this event, please 

contact Chelsea at 888-672-0484 or chelsea@alsmn.org. 

DINNER OF CHAMPIONS, A GALA EVENT 

J oin us for our 8th Annual Dinner of Champions—A Gala Event on Thursday, November 11 th . We will be honoring 

Thomson Reuters at The Northland Inn located in Brooklyn Park. We anticipate 300 attendees, raising $125,000 

through table sponsorships, silent and live auctions, and other contributions made at the event. We will have a special 

presentation to A Race Worth Winning, a group dedicated to raising awareness and funds for the Chapter, and Kathy 

Hult, the driving force who started the Walk to Defeat ALS events in 

Minnesota. Individual tickets and table sponsorships are available. If you 

are interested in joining us, please contact Sandy at the Chapter office 888- 

672-0484 or sandy@alsmn.org. 

STRIKE OUT ALS 

It‘s that time again for our Strike Out ALS program. We 

hope that you will join our fight and cheer on the Minnesota 

Twins at the same time. The Minnesota Twins and Carrier 

are working together with participants like you by 

contributing a pledge per home game strike out. We‘re 

honored to have former Twins Kent Hrbek and Terry Steinbach join us in 

promoting awareness and raising money in support of The ALS Association. For 

complete details and to participate please download a brochure and pledge form 

from our website using the following link: Strike Out ALS brochure. 

Contact Kristina at kristina@alsmn.org or 888-672-0484 with any questions. 


THE 


Upcoming Community Fundraisers 

lease join us in 2010 for the upcoming Community 

P Fundraisers that have been set up as third party events to 

benefit The ALS Association. If you would like more 

information about the following events please contact the 

Chapter Office at 888-672-0484 or info@alsmn.org. 

Saturday, July 10, 2010, Friends of Don Sather 5K Run/ 

Walk, McGregor, Minnesota. Please contact Shelley 

Koerber at shellkoerb@yahoo.com for more information. 

Friday, July 30, Birdies for ALS, Braemar Golf Course in 

Edina, Minnesota. Dinner, silent auction and award 

ceremony will be held at Majors Sports Café in Bloomington, 

Minnesota. Registration begins at 11:30 a.m., with tee-off at 

1 p.m. The cost for this event is only $75. This price includes 

entry into all events, 18 holes of golf, riding cart, dinner, and 

various awards. Call 952-261-7361 to register or register 

online at http:// www.golfdigestplanner.com/12528- 

BirdiesforALS. 

Saturday, August 7, 9th Annual Owatonna Car Show, 

Owatonna, Minnesota. Awards to the top 30 cars and the 

top 3 motorcycles. For more information contact Cathy 

Kniefel at 507-455-0798 or e-mail her at 

bones_08@msn.com. 

Make a Difference for ALS and Win a 42” Plasma TV 

he date has been set for the 5K/10K Walk/Run in Roseau, 

T Minnesota for ALS on July 17, 2010. The team is excited to 

be sponsoring this event again to help raise funds for The ALS 

Association, Minnesota/North Dakota Chapter, for patient 

support and research. Last year‘s event raised over $5,000 and 

team members have set a goal to double that in 2010. After three 

years of running this event in Roseau, the flood of 2002 canceled 

the event and now has been reestablished. The committee has 

joined up with the Roseau Student Council to support the event – 

getting the students involved last year was great, they learned the 

value of giving to others and we hope to expand their 

involvement this year. We will raise funds two ways, one by the 

entrance fee to participate in the 5K or 10K Walk/Run and the 

other will be by individuals collecting donations. The individual 

that collects the most donations will win an Insignia 42" Plasma 

HD TV, there will also be other prizes for the winners who 

collect the most donations in select age categories and many door 

prizes as well. The race again will be dedicated to those who have 

passed away in the area from ALS. For information and/or forms 

for the 5K/10K contact Jane Evans at 218-463-4484 or 

Jane.Evans@Polarisind.com. 

If you have a third party event that you would like everyone to know about please let 

us know and we will post the information on our website. 


Community Partners/Fundraisers 

hank you to the following companies and families for hosting a 

T third party event to benefit The ALS Association, 

Minnesota/North Dakota Chapter. There were several 

events this spring that were extremely successful. 

The Dick Becker Memorial ALS Run 4 Research raised 

$9,435 for ALS research. 

Participants in the Dick Becker Memorial ALS Run 4 Research 

The Jill Hunz Memorial ALS Bowlathon raised $6,930 for 

the Advocacy Fund. This program helps send PALS to 

Washington, DC for Advocacy Day. 

Association Rollx Vans continues its partner program. 

They have now donated $1,700 to our Chapter. 

The First Annual ALS Bike Trek 

raised $22,000. 

Riders at the event getting ready 

Organizers Justin Rumley 

and Bob Stimson 

Do you or someone you know need Real Estate help? Need assistance 

buying or selling a home? Sarah Grendahl and Peter Evans, Executive 

sales associates with Coldwell Banker Burnet, are please to announce 

their exclusive ALS donation incentive. This incentive is extended to all 

ALS members and affiliates. Up to $2,500 dollars will be donated to The 

ALS Association as a result of qualifying closed transactions. This offer is 

limited to transactions exclusively handled by Peter Evans and Sarah 

Grendahl and doesn‘t extend to any other Coldwell banker or NRT 

member or associate. In these times of need we all must do our part for 

those we can. * Contributions based on net sales price of individually 

closed transactions. $100,000-$300,000 a donation of $200 will be made; 

$300,001-$500,000 a donation of $500 will be made; $500,001-$1,000,000 

a donation of $1,000 will be made; $1,000,001+ a donation of $2,500 will 

be made. 

For more information please contact: Peter Evans, cell: 612-384-0728, or go to 

www.Shinyhappyhomes.com; Sarah Grendahl, cell: 612-226-6936, or go to 

www.SarahGrendahl.com . 

www.alsnd.org 


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MN/ND 


The Roadmap to a Cure 

2010 National ALS Advocacy Day and 

Public Policy Conference 

n May, hundreds of advocates from across the country joined 

I together in Washington, D.C. for The ALS Association‘s 2010 

National ALS Advocacy Day and Public Policy Conference. The 

conference is part of a year-round strategic effort by The ALS 

Association to improve patient care, advance research and 

empower people with ALS. By leveraging the resources of the 

federal government, which is the single largest source of ALS 

research funding and patient services in the world, the Advocacy 

Conference is creating the Roadmap that will lead to a cure. 

And whether you were a first time attendee or a conference 

veteran, everyone who attended quickly realized that: 

The power of the conference is found in the people attending and 

the knowledge that families impacted by ALS are not alone in the 

fight – that together they can make a difference. 

THE 


was present on each day of the conference – whether during the 

conference‘s opening session where advocates from across the 

country shared their local success on the as they boarded the bus 

that would take them on the road to a cure, the ―Prep for the 

Hill‖ session or even the Mother‘s Day BBQ where attendees had 

the opportunity to meet hundreds of others who share the 

same experiences and the same hopes in the journey toward 

a treatment. 

Research and Policy Breakout Sessions 

Prior to the Hill visits, advocates heard about the progress 

towards a treatment that has been made possible by advocacy, 

including: 

The Centers for Disease Control and Prevention announced that 

people with ALS will be able to self enroll in the National ALS 

Registry beginning in the fall of 2010 (see http:// 

www.alsa.org/files/pdf/Registry_0610.pdf). At the request of 

the Agency, during the Advocacy Conference, several PALS also 

tested the online website that will be used by people with ALS to 

enroll in the registry. 

Researchers funded by the ALSRP at the Department of Defense 

shared the latest progress as this critical program fills a gap in the 

drug development pipeline, speeding the search for a treatment. 

The Minnesota Delegation 

And make a difference is just what advocates did as they flooded 

the Halls of Congress to tell the ALS story and continue the 

roadmap to a cure. This year‘s goals: 

To increase funding for the national ALS Registry, which may 

become the single largest ALS research project ever created, 

with the potential to not only find the causes of the disease, 

but also how it can be treated and even prevented; and 

Double funding for the ALS Research Program (ALSRP) at the 

Department of Defense (DOD), a program whose sole mission 

is to develop a treatment for ALS. 

Judging by the feedback received from meetings with nearly 400 

Members of Congress, it is clear that advocates made an impact 

as Members of Congress, both Democrats and Republicans, 

signaled strong support for both of our priority issues. 

However, the success of the conference is not only found in the 

results that are produced on Capitol Hill, but also in the ability of 

the conference to empower people with ALS: to give them the 

opportunity to play an active role in the fight against the 

disease - to fight back against ALS. 

And by all accounts, the conference succeeded. The sense of 

empowerment was not only felt walking the Halls of Congress. It 

12 July/August 2010 www.alsmn.org 

Dr. Story Landis, Director of the National Institute of 

Neurological Disorders and Stroke, the single largest source of 

ALS research funding, and several other leaders from the National 

Institutes of Health (NIH) shared exciting developments at the 

Agency, including the TRND (Therapeutics for Rare and Neglected 

Diseases) program and the Cures Acceleration Network, both of 

which are designed to increase and accelerate the search for a 

treatment for ALS and other diseases for which effective treatments 

do not exist. 

Breakout sessions also delivered more information to attendees 

about veterans benefits The Association helped secure in 2008 

for military veterans with ALS; Congressional funding for 

respite care; and the promising therapies in clinical trials. 

Sessions focused on clinical 

care included the latest 

advances in respiratory 

care and brain computer 

interface technologies. 

And for the fourth 

consecutive year, The 

Association held a breakout 

session designed to help 

children and families 

become involved in 

advocacy efforts. 

Join Us in 2011! 

Bud, Evan & Carly Kottsick of Fargo, North 

Dakota with Representative Pomeroy 

The ALS Association encourages the entire ALS community to 

join us for next year‘s conference, which takes place May 8-10, 

2011. And please participate in The Association‘s year-round 

advocacy efforts by signing-up to become an ALS Advocate 

TODAY at www.alsa.org/policy/involved.cfm. 

In the meantime, we invite you to share memories and view 

photos taken during the conference, which are available at 

www.alsa.org/policy/alsday.cfm.

THE 



(Continued from page 4) 

The HFA-ALS Center will soon be enrolling participants for the 

―Validation of ALS Biomarkers‖ study. This study will collect 

blood and spinal fluid samples from four groups of people: early 

ALS patients, pure upper or lower motor neuron disease patients, 

others with neurological diseases, and a healthy control group. 

The second aim is to discover markers of disease progression that 

will then be used to evaluate drug effectiveness in treating ALS. 

Lastly, samples that are remaining will be banked in order to 

provide a quick and ready source of samples to be used in 

exploring future questions and potential treatments. Financial 

compensation is provided for those providing samples to this 

study. For further information on this trial please contact Cindy 

Rohde, RN at crohde@bermancenter.org or at 612-341-7923. 

Mayo Clinic (Rochester) 

Mayo Clinic ALS center is now enrolling ALS subjects for an 

NIH funded study on markers of oxidative cell injury and 

their association with ALS. They will be enrolling 15 subjects 

and following them over time with periodic questionnaires, blood 

and urine tests. This study is being performed in collaboration 

with Columbia University in New York. The study is not a 

therapeutic study but rather an observational study designed to 

investigate the association between these oxidative stress markers 

and ALS. This study is being done to test one of the hypothesized 

etiologies for ALS. If you are interested in learning more about 

this study, you may contact 507-538-1037. 

University of Minnesota Medical Center, Fairview 

The University of Minnesota ALS Clinic research study trialing a 

medication, Ursodiol, as a potential therapy for ALS has been 

placed on hold due to the withdrawal of funding on the part of 

the drug manufacturer. The Clinical Neuroscience Research Unit 

at the University of Minnesota is actively pursuing other potential 

financial resources to fund this study and begin phase II. An 

announcement will be made in The Informer when study 

enrollment once again begins. For more information please 

contact Susan Rolandelli, Clinical Research Nurse Coordinator, 

at 612-624-8431. 

The University of Minnesota ALS Clinic continues its ongoing 

study of familial ALS. If there are multiple blood relatives 

affected by classic ALS, and you would like to participate, call 

Joline Dalton, Genetic Counselor, at 612-625-7967. 

The ALS Association, Minnesota/North Dakota Chapter, is a non-profit voluntary health organization dedicated solely to the fight against amyotrophic 

lateral sclerosis (often called Lou Gehrig’s Disease) through research, patient support, information dissemination and public awareness. 

The ALS Association, Minnesota/North Dakota Chapter 

333 Washington Ave N, Suite 105, Minneapolis, MN 55401 

E-mail: info@alsmn.org 

Web Site: www.alsmn.org or www.alsnd.org 

STAFF 

Chelsea Cronin ___________ Special Events Coordinator 

Sharon D’Souza__________________ Web Administrator 

Kristina Hedberg __________ Special Events Coordinator 

Sandy Judge _________________ Development Director 

Lisa Kronk ______________ Patient Services Coordinator 

Linda Lorentzen _____________ Patient Services Director 

Lourdes McGovern _________________ Office Manager 

Stephanie Manthei _____________ Volunteer Coordinator 

Cheryl Meyers ___________ Patient Services Coordinator 

Jennifer Myhre ___________ Patient Services Coordinator 

Nita Schanback ______________ Database Administrator 

Sue Spalding __________________ Executive Director 

Anne Supplee ___________ Patient Services Coordinator 

Patti Tolo _____________ Vice President of Development 

Phone (Metro area): .......... 612-672-0484 

Toll Free: ........................... 888-672-0484 

Phone (Fargo office): ........ 701-235-2399 

Fax: ................................... 612-672-9110 

Fax (Fargo): ........................ 701-232-1714 

BOARD OFFICERS 

John Miller ________ President 

Amy Brachio __ Vice President 

Scott Kirkland______ Treasurer 

Howard Zack ______ Secretary 

DIRECTORS 

Steve Arsenault Dale Freking Gayle Sit 

Robert Brooks Tony Gemmato Dan Stangler 

Karen Dahlen Scott Kirkland Jean Tracy 

Michelle Dove Michelle Nayar Todd Wind 

HONORARY DIRECTORS 

Kent & Jeannie Hrbek 

David Kolquist 

www.alsnd.org 


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INFORMER - ALS Association - Minnesota Chapter

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