INFORMER - ALS Association - Minnesota Chapter

THE 

INFORMER 

October—November 2012 

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

November is 

In November, Thanking Caregivers and Honoring Veterans 

Thanking caregivers… 

Family caregivers provide approximately $450 billion in unpaid care annually. November 

is National Family Caregivers Month, a time to send a thank you to these special 

individuals for their commitment and support. Send a personalized e-card to a caregiver 

you know from The ALS Association’s website, www.alsa.org/e-card. 

Honoring veterans… 

For unknown reasons, people who serve in the military are twice as likely to develop ALS 

as those in the general population. This Veteran’s Day, honor a veteran with ALS on The 

ALS Association’s Wall of Honor at http://www.alsa.org/advocacy/veterans/, which 

will help raise awareness and support in the fight against this devastating disease. 

I 

O 

National ALS Registry 

ctober will mark the second anniversary since our federal government took a major step in the 

fight against ALS as the Agency for Toxic Substances and Disease Registry (ATSDR) announced 

the full implementation of the National ALS Registry. Every person with ALS in the United States may 

now self-enroll in the Registry via a secure online web portal at the Centers for Disease Control and 

Prevention (www.cdc.gov/als). If you are a person with ALS and haven’t enrolled yet, please do so. 

Or, if you know someone with ALS who hasn’t enrolled, please encourage them to do so. There are 

currently six or seven brief surveys to complete on the website once an account has been created. If 

you have questions about the Registry or do not have a computer, please contact Lisa at the Chapter 

office (888-672-0484 or lisa@alsmn.org). With the support of the entire ALS community, the 

National ALS Registry will help lead researchers in determining what causes the disease, what may 

trigger it in some people, and hopefully, a way to cure ALS. 

I 

Statement on the Clinical Trial of Ceftriaxone 

from The ALS Association, National Office 

n July 2012, the Data and Safety Monitoring Board (DSMB) for the clinical trial of ceftriaxone in ALS recommended that based 

on existing data the trial be stopped because the study was unlikely to reach the pre-determined efficacy criteria. Pre-clinical research 

identified ceftriaxone as a promising treatment for ALS, therefore it was important for people with ALS to find out if the drug could be 

beneficial in ameliorating the disease. The study used a novel seamless adaptive design. Final analysis and presentation of the results will 

occur after completion of site monitoring and database lock. The important contributions of patients, their families and the hard work of 

the investigators and their teams made it possible to implement the trial. While all had hoped for a more positive result, the trial has 

moved ALS research forward. 

FLU Shot Reminder 

nfluenza (flu) immunizations are highly recommended for people with ALS, their caregivers, and anyone who 

comes in regular contact with them. The seasonal flu vaccine helps protect against this year’s most common strain 

of flu. The strain changes each year, so even if you were immunized last year, you will need a new immunization to 

protect you this year. Flu can lead to serious, life-threatening problems, such as pneumonia. Pneumovax 

immunizations are also recommended for people with ALS. This vaccine helps protect against certain bacterial 

pneumonias and does not need to be given each year. Persons over age 65 may need a second immunization if it has 

been over 5 years since your first pneumococcal vaccine. Please talk to your physician about these vaccinations. 

www.alsmn.org October—November 2012 1

MN/ND/SD 

ALS 

THE 


Linda Lorentzen, OTR/L 

Interim Executive Director 

INTERIM EXECUTIVE DIRECTOR’S THOUGHTS 

W 

alk to Defeat ALS events are always awe-inspiring times. 

I had the wonderful opportunity to place a thank you call to the captain of one of the 

Grand Forks Walk to Defeat ALS Teams. Here was a woman who traveled from the Twin 

Cities back to her home town of Grand Forks, North Dakota. Her dad died of ALS long before The 

ALS Association, MN/ND/SD Chapter began providing services. Her mom still resides in the area, 

and they had a good response to their Walk to Defeat ALS fundraising efforts. In fact, they set their 

goal at $2,000 and raised almost $4,000, twice as much as they had hoped! I told her that I was 

particularly touched by their efforts because they were working hard for other people they will never 

meet. They were selfless in their efforts. She told me that they want to do what they can, and it 

didn’t matter to them that they won’t personally benefit from it! 

One of the members of the St. Cloud Walk committee is a young woman, a junior in college, who 

lost her dad to ALS in 2008. I first met her at the St. Cloud Walk in 2008; she insisted that her family attend the Walk, even 

though her dad was on hospice and dying. Her high school community, danceline and soccer players, came to support her 

at the Walk. Her dad died, but she has continued to be involved in the Walk. This year, many high school and middle 

school danceline and soccer players came to support her sisters, but only her roommates came to support her. She is on the 

college danceline, but there was a big football game and her danceline friends told her that they wouldn’t be able to make it. 

I was standing to the side when 86 young women in a pack came running from the parking lot, screaming her name! The 

danceline friends surprised her, surrounded her, and touched everyone who was a witness. 

In all the Walk cities, I can’t help but notice the number of people supporting our Chapter’s Walk to Defeat ALS events 

while receiving their benefits from the Veteran’s Administration. I’ve talked to several people with ALS who have received 

the military service-connected diagnosis and they want to support all of the people with ALS who don’t have the benefits 

that they receive. One military veteran, a woman, attended a Walk, supported by family and friends, and dependent on a 

ventilator for breathing. When I thanked her, she just smiled. 

Over and over these scenes of selfless acts are repeated throughout our service area. People with ALS, their families and 

friends, donors, sponsors, volunteers, and Chapter staff and Board, are all working together for the greater good. It’s 

nothing short of awe-inspiring. 

New Book in Our Lending Library 

aking Myself at Home in a Nursing Home, by Sandra Gaffney, is an excellent resource 

M for anyone thinking about moving to a nursing home. Sandra was diagnosed with ALS at 

age 36 when she had two young daughters. Fourteen years later, she moved into her first nursing 

home. The book was published two years after Sandra’s death in February 2010. 

This book details her experiences and perspective on life in a nursing home. She writes about 

everything from fears one may have to a typical day living with other people and being cared for by 

paid caregivers. Having lived in three facilities in 3 states, she makes keen observations about the 

staff, needs of the other residents, and the culture of a nursing home. 

Sandra covers everything from how to choose a nursing home and how to furnish a room to how to 

preserve strong communication between family members and staff. Her daughters and a friend 

include thoughts and insights throughout. 

Linda Lorentzen, OTR/L 

Interim Executive Director 

A thoughtful and informative book that we highly recommend. Contact the Chapter to check this book out of our library. 

2 October—November 2012 www.alsmn.org

THE 


ALS MN/ND/SD 

WITH OUR DEEPEST SYMPATHY 

We send our sympathy to the families and friends of the following who recently lost their battle with ALS: 

Donald Almond Gene Hansen Jerry Ott 

Mary Bonemeyer Martha Hanson Patricia Otterblad 

Dr. Dick Burton John Hill James Pomroy 

Valere Byerly Helmut Kahlert Dana Ritchie 

Glenford Columbus Dennis Kruzel Monty Robinson 

Jana Edwards Tamara Lucy Nancy Shade 

Marlene Eneboe Danny Merchen LeAnn Tripp 

Lois Fetting Char Nelson Dale Ubelhoer 

Mary Fischer Norlin Nelson Robert Wilson 

Let us fear not, nor grieve beyond letting go the departure of those we have greatly loved, 

for in the tree of life their roots and ours are forever intertwined. 

-Unknown 

Our apologies if we neglected to mention a name, please know that all persons with ALS and their families are in our thoughts and prayers. 

A Day to Remember 

Sioux Falls, South Dakota 

Wednesday, October 10, 2012 

6:30 p.m. to 7:30 p.m. 

Chapel at Avera McKennan Hospital 

1325 S Cliff Ave, Sioux Falls, SD 57117 

ITEMS FOR SALE 

2003 Chrysler Town & Country Limited handicap 

accessible van. 67,000 miles. Rollx conversion. Power 

doors. Sunroof. New tires & new battery. Great condition. 

$20,000*. Call Harold (605) 321-9844. 

Invacare power wheelchair. Tilt feature & power 

elevating leg rests. $7,500*. Call Harold (605) 321-9844. 

* If someone wanted both items, Harold would reduce the 

cost of both. 

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

the newsletter, please call the Chapter office at 888-672-0484. 

A Day to Remember—Duluth, MN 

Thursday, October 18, 2012 

6:30 p.m. to 7:30 p.m. 

Chapel at Essentia Health-St. Mary's Medical Center 

407 East Third Street, Duluth, MN 55805 (218) 786-4000 

Park in the St. Mary’s lot at 4 th Ave E and 4 th Street 

(beyond the hospital bldg.) for $2. 

These events will honor those who have died of ALS with 

music, reflections, readings, and flowers. There will be time 

for conversation and refreshments afterward. 

RSVPs are helpful. Please contact Anne at the Chapter 

office 1-888-672-0484 or anne@alsmn.org 

All are welcome, we hope to see you there! 

W 

Cleaning House 

e are always in need of items that individuals can use 

when eating, dressing, cooking, driving, or doing other 

household tasks. Items used most often are rocker knives, 

utensils with built-up handles, scoop plates, book holders, key 

holders, writing and typing aids, and adapted scissors. If you 

have any of these items or other similar items that you are no 

longer using, we would greatly appreciate receiving them. 

Thanks to your generosity, items can be used by others in the 

ALS community. 

Please contact Cheryl or Nancy at the Chapter if 

you have any questions at 888-672-0484 or 

info@alsmn.org. 

www.alsnd.org October—November 2012 3

MN/ND/SD 


CURRENT ALS RESEARCH STUDIES IN MINNESOTA 

THE 


ALS Center of Excellence, Hennepin County Medical Center (HCMC), Minneapolis 

(Formerly known as HFA-ALS Center) 

The ALS Center of Excellence at HCMC (former HFA-ALS Center) has completed the Ceftriaxone and Dexpramipexole trials. Both 

studies will likely have study results available by the end of the year or early 2013. 

Educating for empowerment & quality of life: A study of ALS patients & caregivers: 

The ALS Center of Excellence at Hennepin County Medical Center is partnering with the University of St. Thomas to build patientcentered 

models for the ALS journey. Patients and their caregivers are fully informed participants who are educated to collaborate with 

health care providers to determine courses of treatments that are specific to each patient’s goals and abilities. A research team from the 

University of St. Thomas is currently working with newly diagnosed individuals with ALS and their caregivers to better understand their 

needs. Others from the University are seeking to understand the work of each person in the interdisciplinary team and their needs in 

order to identify areas where communication, resources and support can be improved for people with ALS, their caregivers and health 

care providers. 

The ALS Center of Excellence at HCMC is anticipating opening a new study this Fall. Nuedexta is an FDA approved medication 

that is currently used to treat the symptom of pseudobulbar affect in ALS patients. The new study will determine if Nuedexta can also 

improve other bulbar symptoms such as swallowing and speech difficulty and an excess of saliva. The medication is not a treatment for 

ALS but is used for symptom relief in those patients who have the bulbar form of ALS. Participation will be for approximately 3 

months. Participants must be at least 18 years of age with no prior use of Nuedexta. Participants should be located close to the study site 

and be able to follow study tasks. 

Tirasemtiv is being investigated as a potential new therapy for the improvement of muscle weakness and muscle fatigue in patients with 

amyotrophic lateral sclerosis (ALS). The purpose of this research study is to evaluate the safety and effectiveness of Tirasemtiv versus 

placebo when taken with or without riluzole and how well it is tolerated in patients with ALS. This is a phase IIb study. Patients will be 

on study drug for approximately 12 weeks. Certain eligibility criteria must be met to be able to participate. 

If interested in any of these studies, please contact the study coordinator, Cindy Rohde, RN at 612-341-7923 or by e-mail at 

crohde@bermancenter.org. 

To be included on our research alert list and for information on upcoming trials, please contact Cindy Rohde, RN, ALS research 

coordinator, at 612-341-7923. 

Mayo Clinic (Rochester) 

Mayo Clinic ALS Center is 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. 

Mayo Clinic has begun a phase I safety study on the use of intrathecal mesenchymal stem cells in ALS. This study has very limited 

availability however additional information can be pursued through http://clinicaltrials.gov/show/NCT01609283 and 

rstalsresearch@mayo.edu. 

University of Minnesota Medical Center, Fairview (Minneapolis) 

A research study evaluating an investigational medication for people with ALS is currently being conducted by Dr. David Walk at the 

Clinical Neuroscience Research Unit (CNRU) at the University of Minnesota. Enrollment has been completed for this study. 

The Clinical Neuroscience Research Unit (CNRU) at the University of Minnesota is conducting an observational study of the effect of 

botulinum toxin injections on speech ability in patients with primary lateral sclerosis (PLS) or amyotrophic lateral sclerosis (ALS). 

You may qualify for the study if you: 

Have been diagnosed with PLS or ALS 

Have been prescribed botulinum toxin injections for drooling or jaw stiffness 

For more information, contact cnru@umn.edu or 612-624-7745. 


THE 


VOLUNTEER OPORTUNITIES 


Walk Committees 

Support the Walk to Defeat ALS by serving on a fundraising committee. Committees work on securing walk sponsors, donated food, 

entertainment, and publicity. It meets one hour monthly. Specific meetings dates are determined by committee members. 

Bismarck, ND ------------------------ Meets by conference call December–May on weekdays at Noon 

Grand Forks, ND -------------------- Meets by conference call December–April on weekdays, 4 p.m. 

Mankato, MN ------------------------- Meets by conference call Nov–April, time and day determined by committee 

Minot, ND ----------------------------- Meets by conference call December–May on weekdays at Noon 

The ALS Association SuperHero 5k/10k Dash 

Volunteer at this fun and new event for The ALS Association on Saturday, October 13, 2012 at Lake Phalen Park in St. Paul from 

7:30 a.m. – 12:00 p.m. Assistance is needed in the following areas: registration, t-shirt and food distribution, decorating, signs, chip 

collection, advocacy, and more. 

Walk to Defeat ALS 

Make the day of the walk go smoothly by helping with t-shirt distribution, food, decorating, signs, face painting, advocacy, and more. 

Sioux Falls, SD ............................................ Saturday, October 20 2012 ................7:30 a.m.—Noon 

Help a Person with ALS 

Brooklyn Park, MN ------------------------------ Every other week, 2-3 hrs.—Clean and yard work 

Golden Valley, MN ------------------------------ Once a week, 2-3 hrs.—Clean, laundry, meals 

Hawley, MN --------------------------------------- 2-4 times a month, 3-4 hrs.—Visit, errands, garden, chores, maintenance, meals, 

pet care, scrap booking, yard work, snow removal 

Lakeville, MN ------------------------------------- Once a week, 3-4 hrs.—Clean, laundry, pet care (cat), phone calling 

Lyle, MN ------------------------------------------- Once a week, 3-4 hrs.—Laundry and visiting 

New Hope, MN ---------------------------------- Every 2 weeks, 2-3 hrs.—Clean 

Oak Park Heights, MN------------------------- Flexible with frequency—Visiting, make phone calls, internet research 

Rice, MN ------------------------------------------- Once a week, 1.5-2 hrs.—Clean 

Sauk Rapids, MN -------------------------------- Every 2 weeks, 2-3 hrs.—Clean 

St. Paul, MN --------------------------------------- Once a week, 2 hrs.—Clean 

St. Peter, MN -------------------------------------- One time, 3-4 hrs.—Yard work 

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

webpage by clicking here. 

Volunteering is a Priceless Gift 

Written by volunteer Michelle Berg 

he mission of The ALS Association, Minnesota, North Dakota, South Dakota Chapter 

T states, ―Until there is a cure, empower people with Lou Gehrig’s Disease and their 

families to live fuller lives by providing them with compassionate care and support while 

contributing to the fight to treat and cure ALS through global research and advocacy.‖ 

Without the unwavering support of volunteers, this mission would fall short. 

Meagan Holtz is one of the priceless volunteers that has given of her time to participate in 

the volunteer program. Meagan came to volunteer through a personal experience with people 

Betty & Glenn Sundeen 

with Meagan Holtz 

with ALS in a hospice situation. This experience gave her perspective and a desire to do more. She states, ―I feel that people 

with ALS and their caregivers are a greatly underserved part of the community, and I wanted to do something that would 

enhance their lives in a significant way.‖ She works with Glenn, a person with ALS, and Betty, his wife and caregiver. She has 

helped them with shoveling snow, cooking, baking, mowing the lawn, and some light work sweeping and vacuuming. Most 

of her time is spent with Glenn whom she enjoys a great deal. She believes volunteering has changed her life in an 

(Continued on page 6) 


MN/ND/SD 


THE 


SUPPORT GROUP SCHEDULES & UPDATES 

Due to unpredictable weather, location changes, facilitator illness, holidays, and/or other possibilities, we ask that you 

RSVP for each group. If the group is cancelled for any reason, we will make every attempt to notify you. 

The ALS Association, Minnesota/North Dakota/South Dakota Chapter Support Groups 

Bismarck Area Support Group .................... Bismarck, North Dakota ............................... click here 

Mankato Area Support Group ..................... Mankato, Minnesota ..................................... click here 

Minneapolis Support Group ........................ Minneapolis, Minnesota ............................... click here 

Rochester Area Support Group ................... Rochester, Minnesota ................................... click here 

Saint Cloud Area Support Group ................ Saint Cloud, Minnesota ............................... click here 

Family Caregiver Support Group ................ Minneapolis, Minnesota ……RSVP required to attend! 

The ALS Association, MN/ND/SD Chapter Office, 333 Washington Ave. N., Suite 105, Minneapolis (Union Plaza 

parking lot). 3 rd Wednesday, 7:00-8:00 p.m. (Please arrive at 6:45 p.m.) Next meeting: Wednesday, October 

17. No meeting in November due to the Thanksgiving Holiday. RSVP to Jennifer Myhre, LICSW at 1-888-672- 

0484, or jennifer@alsmn.org. 

If you have any questions about these groups, please contact Care Services Coordinators, 

Jennifer Myhre, LICSW, jennifer@alsmn.org, or Anne Supplee, MDiv, anne@alsmn.org, or call 888-672-0484. 

Please click on the following link to view the specific information for all ALS support groups in our service area: 

http://webmn.alsa.org/site/DocServer/SG_List.pdfdocID=3681 

Bereavement Support Group 

he Chapter has held a bereavement support group in St. Paul for several years. It is the Chapter’s goal to provide 

T compassionate care and support to those living with ALS, as well as those who have lost someone to the disease. For 

the past year attendance has been quite low and participants chose not to meet this summer. After consideration and input 

from constituents, we will be ending the bereavement group at this time. If it becomes clear that an ALS-specific group 

would be helpful again, we will survey folks to assess needs/location/ etc. 

If you would like to attend a grief group please contact Anne Supplee, MDiv for a list of resources in your area, 

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

(Continued from page 5, Volunteering is a Priceless Gift) 

unexpected way. ―I feel that Betty and Glenn have added to the width of my life. I no longer look at volunteering with The 

ALS Association separate from who I am; it is a part of me now.‖ 

Glenn and Betty Sundeen have had a similar experience accepting and receiving the help from a volunteer. Although the two did not have 

any apprehensions in receiving a volunteer, they did wonder why a stranger would agree to help someone they hadn’t met and did not 

know. What they have come to realize is that a volunteer can come and show genuine interest and compassion in not only helping them, 

but in them as individuals. Meagan has eased the burden for them giving them peace of mind. Betty and Glenn have found comfort 

having Meagan around. Betty says, ―Meagan has been more than just a volunteer. It is hard to put into words how much we appreciate 

what she does for us.‖ It is clear that volunteering is a priceless gift that many people can provide. 


THE 


CHAPTER 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 people diagnosed with ALS who live in our service area. 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 PROGRAM 

The Jack Norton Family Respite Program provides much needed 

respite to full-time family caregivers and assures that persons with ALS 

are well cared for when their family member is away. The MN/ND/SD 

Chapter will pay for up to 18 hours/month of respite care for a fulltime 

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 tells 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 Nancy at the Chapter office (888-672-0484), and they will 

check 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. 

Persons with ALS 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 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. For more information, request a DVD on 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 Linda Lorentzen at The ALS Association, MN/ND/SD Chapter, with 

any questions on how to designate your contributions 888-672-0484 or e- 

mail her at linda@alsmn.org. 


ALS SPECIALTY CLINICS IN 

OUR SERVICE AREA 

ALS CENTER OF EXCELLENCE, Hennepin County 

Medical Center (HCMC), Parkside Building (formerly 

called HFA-ALS Center) 

Mailing Address: 701 Park Ave, PPC 250, Minneapolis, MN 55415 

Clinic Location: 825 South 8th Street, Suite 250, Mpls., MN 55404 

612-347-5224 *Nationally certified ALS center 

Medical Director: Dr. Ezgi Tiryaki 

Clinic Nurse: Heather Sutherland, RN 

AVERA NEUROSCIENCE INSTITUTE 

800 E 21st St., Sioux Falls, SD, 57105-1096, 605-332-1610 

Medical Director: Dr. Karen Garnaas 

Clinic Coordinator: Pam Michels, RN 

ESSENTIA HEALTH, Duluth Clinic Neurology 

400 East Third St., Duluth MN 55805, 218-786-3930 

Medical Director: Dr. Amber Erickson 

Clinic Coordinator: Lisa Katzmarek, CMA 

MAYO CLINIC 

200 First Street SW, Rochester, MN 55905, 507-538-1037 

*Nationally certified ALS center 

Medical Director: Dr. Eric Sorenson 

Clinic Coordinator: Julie Hovda, RN 

SANFORD HEALTH NEUROSCIENCE 

Sanford Coordinated Treatment Center 

736 Broadway, Fargo, ND 58122, 1-800-437-4010 ext. 4020 

Medical Director: Dr. Kara Eickman 

Clinic Coordinator: Peggy Mondry, RN 

SPINAL CORD INJURY CENTER , 

VA HEALTH CARE SYSTEM 

One Veteran's Drive 

Minneapolis, MN 55417 

(612) 629-7005 

Clinic Nurse: Anne Bateman, RN, NP 

UNIVERSITY of MINNESOTA MEDICAL CENTER, 

FAIRVIEW 

420 Delaware Street SE, Minneapolis, MN 55455, 612-624-7134 

Medical Director: Dr. David Walk 

Clinic Coordinator: Leslie Phidd, RN 

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


MN/ND/SD 


THE 


INFORMATION LINKS 

ased upon information gathered in our annual survey, we are establishing this newsletter item entitled Information Links. Feedback 

B from those of you who have completed the annual survey revealed that many of you wanted to access information when you 

were ready to learn about a particular topic. Therefore, each article will have its own link to a website versus being published in the 

newsletter. The list will continue to grow during the coming months. If you do not have access to a computer and want a hard copy of 

any article, please contact our office. If you have any feedback about Information Links, contact Cheryl Meyers, Care Services 

Coordinator, at 888-672-0484 or cheryl@alsmn.org. 

DATE 

Webinars: 

August 2011 

October 2011 

TOPIC (click on the link) 

Traveling With A Disability 

Nutrition and ALS 

March 2012 Home Modifications 101 

Articles: 

March 2012 

April 2012 

June 2012 

June 2012 

June 2012 

June 2012 

July 2012 

July 2012 

September 2012 



Are You Ready for Hospice 

E-Books 

Communicating With Your Physician 

Most Commonly Asked Questions About Children and Grief 

Questions Children Ask About ALS 

Range of Motion 

Preparing for the Final Journey with ALS 

Do You Want a Feeding Tube 

Journeying at End of Life 

Research Primer 

Genetics and ALS 

Employee Giving Campaigns 

here are many ways to give to The ALS Association, Minnesota, North Dakota, South 

T Dakota Chapter and one of the easiest is through workplace giving campaigns. During 

the fall months, many companies begin their annual employee giving campaigns, where 

employees can donate funds to the charity of their choice through payroll deductions. 

We are proud members of Community Health 

Charities in Minnesota. 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, North Dakota, South 

Dakota Chapter (our legal business name) and the donation will come to us. 

Thanks to those who participate in this form of giving. 


THE 



TRIBUTES, MEMORIALS & CONTRIBUTIONS 

To the best of our knowledge, the following list includes contributions made July and August, 2012. 

Online donations received during this period may be delayed in processing. 

TRIBUTES 

In Honor of: 

Norman & Gladys Abernathey 

Sid & Gerry Lipton 

Geoff & Deborah Perel 

Ben & Lisa Boyum 

Diane Anderson 

Daniel Hacker 

Connie Baumann 

MEMORIALS 

In Memory of: 

J. Richard Burton 

Anton Spraitz 

Robert Busch 

Ferial Abraham 

Robert Andersen 

Julie Anderson 

Sharon Bartz 

Phyllis Bentley 

Gary & Susan Bommersbach 

Dorothy Borgstrom 

Christie Byerly 

Susan Clark 

Kristin Coyle 

Jean DeBoest 

Brent & Amy Delzer 

Alan & Frances Dexter 

Corinne Donaldson 

Lawrence Donohoe 

Robert Dowdy 

Emma Duren 

D. C. Folsom 

Jay & Laurie Folz 

Neal Forrest 

John Frederick 

Wayne Fritz 

Dian Gardner 

Burle Gengenbach 

Janice Gilley 

Susan Godeke 

Deanna Godfrey 

Vernon Gunion 

Dr. Jeffrey Gunsolus 

Eunice Hadlich 

James Hammond 

Bruce Hamnes 

Alice Hedberg 

Arva Herman 

Emily Herman 

Shawn Jacobs 

Kathleen Johnson 

Dr. Bruce Kramer 

John & Joann Lamb 

Ken Lebsock 

Patricia Lehman 

Charlene Lucken 

Lois Lynch 

Wendy Magnuson 

Gordon Marten 

Richard McKelvey 

Sharon Miller 

James Miller 

MN Association of Wheat Growers 

Joanne Montie 

Donna Nalewaja 

Marlys Nelson 

John Nyberg 

Elizabeth Oelke 

Amy Olmscheid 

Anne Olson 

Sally Pritchard 

Howard Rieke 

Lisa & Matt Rinker 

Jack Riopelle 

Susan Rudie 

Rojean Scheuble 

Betty Schlotthauer 

James Sentz 

Craig Sheaffer 

Joyce Smith 

Dick Sonterre 

Carol Sporre 

Judy Stuthman 

Renee Sullivan 

Roy Thompson 

Michele Thomson 

Sharon Timmins 

Dave & Mary Torgerson 

Larry Tourte 

Alan Tribble 

Rosemary Vittelli 

Wessling Farm Inc. 

Sandra & Dean Whited 

Jochum & Jacoba Wiersma 

Steve Wilke 

Jerome Winters 

Gina Zitzer 

Valere Byerly 

Anonymous Donor 

Ernie Byerly 

Deanna Dubel 

Larry Kemerling 

Sandra Nelson 

Martha Petersen 

Alice Speckien 

Dean & Dawn Stromsborg 

Anne Sweeney 

Larry Craig 

Mary Lou & Greg Spurrier 

Robert Danzl 

Janice Danzl 

Mark Ekstrand 

Julie Burkhardt 

Bonnie Eliason 

Julie Burt 

Pearl Burt 

Adda Campbell 

EBS Charities 

Curtis Larson 

Donna Schwan 

Eugene Evans 

Sara Evans 

Donald Fleming 

Corine Fleming 

Kristie Greve 

Janice Weiss 

Thomas Gwaltney 

Barb Gwaltney 

Sharon Hoffman 

William Haagenson 

Peggy Ashdown 

Lynda Berckefeldt 

Sherry Bolding 

Susan Child 

Bill Crapser 

John Crisp 

Joan Haagenson 

Marsha Kiner 

Jamie Klaassen 

Debra Kruger 

Reginaldo Muniz 

Daniel Perko 

Heather Reed 

Marlene Thorson 

James Hendley 

Emerson Process Management 

Marilyn Johnson 

Edward Johnson 

Bertha Kadlec 

Marilyn Noga 

Vernon Kotula 

Boulay, Heutmaker, Zibell, PLLP 

Joseph LaBuda 

Family Survivors Trust 

Linda O'Brien 

Paula Leary 

Ellen Kelley 

Leilani Limanen 

Edwin Limanen 

John Mamer 

Anne & Dennis Chapman 

Craig Martinson 

Maura Strausberg 

Susan McAllister 

Lee Zurek 

Charles Nalipinski 

Elaine Nalipinski 

Ellen Niskanen 

Marnie Schaffer 

Clark Norberg 

Beverly Johnson 

Virgil Johnson 

Carol Orren 

Craig Banwell 

Madeline Banwell 

Hess Family, Pete, Cindy, DJ, 

& Danny 

Jerry Ott 

Bonnie Coghlan 

Arnold Pajari 

Marnie Schaffer 

Phyllis Perrine 

Hess Family, Cindy, Pete, D.J. 

& Danny 

Paul Roberts 

Patricia Batdorf 

Timothy Roemhildt 

Jennifer Pate 

Mary Van Leeuwen 

William Rolfe 

Amy Adamson 

Wilor Bluege 

Kathryn Engman 

Richard Hendrickson 

Laura Kakach 

Susan Keeley 

Nancy Rolfe-Bailey 

Laurie Ryan 

Esther Schepper 

Berne Shannon 

Jean Tessmer 

Joyce Volkert 

Evelyn Schuman 

Anonymous donor 

David Sheets 

Khrystenn Asariah 

Mrs. Silverberg 

Madeline Banwell 

Eva Sova 

Donna Buchta & friends at 

Medtronic Corporate Comm. 

Jana Gilsrud 

Marie Hasselfeldt 

Ronald Haugen 

Gen Jansen 

Gladys Johnson 

Nancy Naig 

Les Norman 

Leigh Porter Hepokoski 

Mark & Jean Raabe 

Les Sova 

Arlen & MarlysThorsgaard 

Walt Steigerwald 

Charles & Turi Whiting 

Melvin Stromgren 

Bruce Knowlton 

Donald Sullivan 

Actuarial Advisors, Inc. 

Robert Anderson 

Susan Anderson 

Bonnie Arend 

Bartels Truck Line Inc. 

Barbara Berquist 

Beskau Transport, LLC 

Patricia Blomquist 

Buck Brennan 

Mark Brennan 

Francis Broderick 

Teresa Bruckner 

Charles Burnside 

George Burnside 

Chippewa Middle School 

Cindy Cook 

James & Jane Daly 

Terrence Daly 

Gary & Sharon Daniels 

Linda Deiters 

Michael Dickson 

Florian Dittrich 

Eilen & Son's Trucking, Inc. 

Annikka Erickson Strong 

Denise Fudally 

Hugh Fugleberg 

Juan Galloway 

Benjamin & Dolores Griffith 

Barbara Grillo 

Marguerite Gronskei 

Teri Gustafson 

Jill Hallenberger 

Tim & Joan Heinle 

Hicks Trucking Company 

Mary Holmgren 

Michelle & Scot Hultberg 

Mary & Daniel Jaeger 

Allen Johnson 

Kalina, Wills, Giavold & Clark 

Victoria Kearney 

Sandy Kelley 

Kings Express 

Carol Korzan 

James Labreche 

Megan Walsh Ling 

Beverly Loken 

William Lundquist 

Gregory Madsen 

Yvonne Manijak 

Dawn Manning 

Manning Transfer 

Lucas McDonald 

Messerli & Kramer P.A. 

Midwest Compliance, Inc. 

Minnesota Valley Transport, Inc. 

Kim Nagler 

Duane Nawrocki 

Karna Nelson 

Tony Nelson 

Anita Neumann 

Rebecca Nordeen 

Marcelline O'Rourke 

Cindy Pass 

Brad Pleimling 

Jason Pribbernow 

Diane Raboin & Letoile Hickey 

Kip & Diane Raboin 

Cathleen Radke 

Janelle Rasmussen 

Darlene Ricke 

Noreen Seman 

Leslie Senden 

Sherman Insurance Agency 

Kimberly Smith 

Phillip Smith 

Lee Spelbrink 

Bonnie Steier 

Styler Transportation Co. 

Sharon Thibault 

Christina Thill 

Gaylene Thomas 

John & Beth Tillmann 

Chad Utley 

W. James Walker 

Kathleen Wiberg 

(Continued on page 10) 


MN/ND/SD 


THE 


(Continued from page 9) 

Earlene Williams 

Enga Wodziak 

Georgeann Wright 

Theresa Tsai 

Leo Tsai 

Lois Welshons 

Elizabeth Welshons 

Joseph Winter 

Vernon & Mary Winter 

Beatrice Young 

William Young 

Robert Zundel 

Judith Madden 

ANNUAL APPEAL 

DONATIONS 

John Adamich 

Rodger Adams 

Terry Alewine 

Margie Amiot 

Bev Anderson 

Doris Anderson 

Kathleen Anderson 

Lowell Anderson 

Marlys Anderson 

Craig & Amy Arneson 

Phil Bachman 

Marjorie Baier 

Steven & Jeanne Ball 

Michelle Bartel 

Tom Bauer 

Charlene Behne 

Shirley Beine 

Dan & Dee Bender 

Marilyn Berry 

Robert & Geraldine Bonner 

Richard Bremer 

Dennis Brinkman 

James Broberg 

Angeline Brown 

Robert & Dorothy Bruer 

Gary Brumberg 

Erne Bulach 

Jacqueline Burgoon 

Connie Burke 

Bob Calander 

Joseph Cavaleri 

Leota Chase 

Mary Christian 

Diane Chynoweth 

Jim Collins 

Kathleen Connor 

Roger Corbin 

Thomas & Karen Corneil 

Dale Curtis 

Vincent Dalke 

Kenneth & Marjorie Dean 

James Decker 

Judith Dentinger 

Rona Emerson 

Donald & Trudy Emory 

Phyllis Erickson 

Steve Erickson 

Mary Fabry 

Donald & Irma Faulkner 

Larry Fearing 

Richard Fink 

Lavonne Fischer 

Rick Fishbune 

Marlys Fiterman 

David Flaherty 

Harley Flathers 

Jay Foley 

Richard & Katherine Fournier 

Robert Fredrickson 

Jenny Gabor 

Donald & Colleen Gandrud 

Jeanine Gatzke 

Helene Georgalan 

Stephanie Glascock 

Bonnie Grabau 

Patricia Grant 

Dorothy Hallin 

Bill Handsaker 

Maryalice Hanson 

Amanda Haseleu 

Philip Havatine 

Howard Heller 

Annette Herdzina 

Elizabeth Herman 

Dave Hines 

Gerda Hofmann 

Mary Budd Holmes 

Pat Horvath 

Ruth Howe 

Charles Hudgins 

Jeremy Hullopeter 

Donald Huntington 

Arnold Iffert 

Beth Ireland 

Jeff Jamar 

Audrey Jarosh 

David Jensen 

Julayne Johnson 

Mary Jean Johnson 

Ron Johnson 

Delores Jones 

Ron Jungbauer 

Thomas Kahlert 

Gayle Kaplan 

Ida Karstens 

Delaine Kelly 

Glenn Robert Kiel 

John Kirchner 

Vicki Kleeberger 

Timothy & Geraldine Kleiter 

Lora Knafla 

Bonnie Kreatz 

Robert & Clare Kreuser 

Cathy LaClair 

Eric Larson 

Gaynelle Lee 

Joanna Parker Lees 

Joyce LeMay 

Kay Lemke 

Marvin & Coralyn Lempola 

Andrea Lenz 

Robert & Carole Lohmar 

Nancy Long 

Beverly Ludeman 

Merlyn Lutter 

Thane Malmstone Jr. 

Jeanette Mapes 

Deborah Marcella 

Keith Martens 

Rosemary Martin 

Donald Maschino 

Gwenetta McMahon 

Kathleen McManus 

Charles & Elizabeth 

McWilliams 

Arlette Mikulich 

Thomas Milton 

Rolf & Marlene Mohwinkel 

Mason & Gwen Myers 

Delia & Donnal Nelson 

James Nelson 

Janice Newberg 

Aaron Nienow 

Marjorie Noyes 

Carol Olson 

Eric Overby 

Virginia Paulsen 

Jane Pederson 

Tim Peterson 

Todd Peterson 

Warren Peterson 

Lorraine Pierce 

Joanne Piper 

Mark Popovsky 

Myrtle Pouliot 

Diane Prellwitz 

Lyle & David Priem 

Carolyn Proehl 

Annella Provo 

Anna Quarnstrom 

Bernadette Quist 

Genie Reed 

Carolyn Rendler 

Edward Rice 

Lynda Richardson 

Mark & Karen Richter-Young 

Paul & Arlene Riggert 

Patricia Rist 

Juliet Roe 

Richard & Valera Rohrer 

Joellen Roller 

Floyd Roman 

John Romano 

Betty Ronning 

Mary Rook 

Virginia Rowe 

Kathy Rutz 

John Ryan 

Patricia Rypkema 

Stephanie Schech 

Kenny & Joyce Schiroo 

Pam Schlagel 

Mary Schlattman 

Laverne Schleicher 

James Seburg 

Barbara Serbin 

Mary Shelley 

Marie Shippee 

Suzanne Shuman 

Charlotte Sieben 

Muriel Simpson 

Doreen Smoley 

John Snyder 

Nikki Snyder Roberts 

Barbara Solum 

David Sorlie 

Thomas Spencer 

Jacqueline Stevermer-Bakken 

Duane Struck 

Keith Stutz 

Heimer Swanson 

Michael Sweeney 

Roger Swinton Family 

Beth Taylor 

Ella Tempel 

Dennis & Mardell Thompson 

Ted Thompson 

Terry Thul 

Carol Tillman 

Maryelva Twete 

Sharon Uphus 

Earl Vanberkom 

Lorraine Veurink 

James Vleck 

Eric Volk 

Kevin Walli 

Rosemary Walsh 

John Welshons 

Shirley Wesmann 

Carol Whitman 

Kitty Widdes 

Teddy Wong 

Connie Zakula 

GENERAL 

CONTRIBUTIONS 

Company Matches 

Bank of America 

Blue Cross Blue Shield of MN 

GRACO Company 

ING Charitable Giving Program 

Microsoft Corporation 

Thrivent Financial for Lutherans 

UnitedHealth Group 

Employee Giving Campaigns 

Accenture 

Allina Health System 

American Express Charitable 

Fund 

Ameriprise Financial Employee 

Giving Campaign 

AT&T United Way 

Blue Cross Blue Shield of MN 

CitiGroup Foundation 

Ecolab Inc. 

GRACO Company 

HealthPartners Employee 

Giving Campaign 

IBM 

ING Charitable Giving Program 

JC Penney 

Microsoft Corporation 

PiperJaffray 

Raytheon Charitable Giving 

Target Corporation 

Thrivent Financial for 

Lutherans 

UnitedHealth Group 

UPS 

Wells Fargo Community 

Support Campaign 

Federated Campaigns 

Combined Federal Campaign of 

the Red River Valley 

Community Health Charities - 

National 

Community Health Charities MN 

Community Shares of Minnesota 

Jackson United Fund, Inc. 

Truist (formerly United eWay) 

United Way of Greater Kansas City 

United Way of Greater 

Philadelphia and Southern New 

Jersey 

Individual Donations via EGC 

Anonymous Donors 

Jessica Ahrenstorff 

Tony Andersen 

Tina Anderson 

Tabitha Bartz 

Mark Besser 

Gregory Betlach 

Kathleen Blau 

Maurice Bryan 

Mark Buermann 

Traci Chepeus 

Mary Ann Clacko 

Rachel Cowlishaw 

Mark Dean 

Debra Deanovic 

Maria Delmoro-Hultman 

Melanie Douglas 

Amanda Drew 

Margaret Fegan 

Wren Feyereisen 

Arvin Fisher 

Theresa Foss 

Julie Friend 

Thomas Grocott 

Justin Grussing 

Andrew Hartos 

Joel Haugen 

Nicolette Hildebrand 

Karl Hills 

Ryan Holm 

Matthew Hudnut 

Kevin Idahor 

Christine Jackson 

Adam Jenkauski 

Cynthia Johnson 

Laura Johnson 

Sandy Johnson 

Trevor Jones 

Collin Jordre 

Amanda Kaufer 

Vicki Keith 

John Koenig 

Amanda Kolquist 

Jessica Kostner 

Lisa Kreidler 

Dawn Kunze 

Darlene Leitch 

Lynn Lindenfelser 

Tonya Lindquist 

Rachel Lund 

Bradley Lundberg 

Vicki Majorowicz 

Dielle Meisner 

Angela Milinkovich 

Megan Mittelstaedt 

Debra Moes 

Michelle Mohr 

Tina Nelson 

Stacie Nelson 

Daniel Nimtz 

Steven Noble 

Linda Nucci 

Adrian Orth 

Ronald Ortloff 

Sarah Otremba 

Mary Peterson 

Karen Port 

Marisa Pringles 

Anne Reis 

Raymond Ridl 

John Ritchie 

10 October—November 2012 www.alsmn.org 

(Continued on page 11)

THE 



(Continued from page 10) 

Lisa Rothgeb 

Matthew Rude 

Thomas Samlaska 

Joy Scheil 

Cathy Schmitz 

Ann Schroeder 

Jason Schultz 

James Skinner 

Michael Spolidoro 

Kara Spolidoro 

Brian Stai 

Julie Steffen 

Marcus Strom 

Emily Stump 

Mary Swanson 

Karen Verbeke 

Andrea Weatherly 

Margaret Weir-Sangalli 

Craig Willford 

Jordanna Williams 

David Wuerger 

Mary Kay Wurzinger 

Grants 

Bob and Diane Coderre 

Family Fund 

Contributions 

ALS Association National Office 

Timothy Bredahl 

DexOne 

Alan Dexter 

Jeanette Fladebo 

Gemini, Inc., c/o Dave Schmitt 

George Goff 

Rudolf Hokanson 

Honeywell International Charity 

Matching 

Itasca Consulting Group Inc. 

A. J. Kabus 

KPMG 

Kathy Ledo 

Dandy Lewis 

Dr. Donald Bryce Lindsay 

James Meier 

Greg & Lisa Oothoudt 

Brad Price 

Pride Mobility Products Corp. 

Reliable Medical Supply 

Ronald & Margaret Renn 

Marilee Stevens 

TCF Foundation 

Vernon & Mary Winter 

Equipment Donations 

David Anderson 

Shannon Blomquist 

Tom Bramer 

Mavis Busch 

Pat & Kathy Conway 

Debra Deanovic 

Ulla Elste 

Estate of Martha Hanson 

Douglas Koch 

Dr. Bruce Kramer 

Maria Mancuso 

Patricia Otterblad 

Carol Peterson 

Ruth Prosiski 

Estate of Vanetta Richards- 

Rosenberg 

Katherine Rivard 

Sanford HealthCare Accessories 

Carol Shea 

Bonnie Sullivan 

Darlene Tegeler 

Terry Voeller 

Steve Vonwahlde 

Gordon Witter 

We gratefully acknowledge the people and 

groups who generously made memorial gifts 

and contributions to our Chapter since the last 

newsletter. Money received support programs 

and services, public awareness, and research 

into the cause 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. 

Strike Out ALS Program Recognized at Target Field 

ver since his Farewell Speech in 1939 Lou Gehrig has brought national and international attention to ALS, a disease 

E that now commonly bears his name. By abruptly retiring from baseball after being diagnosed with what would soon be 

known as Lou Gehrig’s Disease, a bond was cemented between the baseball and ALS communities. 

Today as many as 30,000 Americans have ALS at any given time. This disease has cut short the lives of many notable and 

courageous individuals including the fathers of two former Minnesota Twins: Kent Hrbek and Terry Steinbach. To show 

their support for everyone who has been touched by Lou Gehrig’s Disease, the Minnesota Twins and Carrier pledged to 

donate to The ALS Association for every home game strike out by the Minnesota Twins. Their grand contribution for the 

2012 season is $10,000. Following the lead of the Twins and Carrier, this summer 85 individuals stepped up to the plate and 

made pledges to the Strike Out ALS program. These individual donors will contribute an estimated $9,500 this year. 

All proceeds from the Strike Out ALS program will be used to assist people with 

ALS in Minnesota, North Dakota and South Dakota. Through fundraising efforts 

like this, The ALS Association is able to support people with ALS and their 

families as they face the daily challenges of living with the disease. This support 

comes through the Hrbek-Sing Communication & Assistive Device Program, the 

Jack Norton Family Respite Program, the Durable Medical Equipment Loan Pool, 

support groups as well as other services. Money raised through the Strike Out ALS 

program will also go toward helping to find a cure for ALS. 

This year’s Strike Out ALS efforts were recognized before the Twins game on 

September 14 th at Target Field. Representatives from Carrier, the Minnesota Twins 

and The ALS Association gathered for the presentation of a $10,000 check for The ALS Association. Also in attendance on 

the field were Lois Untinen, a 2012 Strike Out ALS participant, and Erica Lemna, who is the current Miss North Dakota 

International. Inspired by her mother who has ALS, Erica has been traveling the country with a platform of ALS awareness. 

Erica’s ALS advocacy as Miss North Dakota International is her way of showing support for this organization that has 

helped her family. Her hope is that The ALS Association may continue to support other families facing an ALS diagnosis. 

Thank you to everyone who supported the Strike Out ALS program in 2012! 


MN/ND/SD 


THE 


FANTASTIC CHAPTER FUNDRAISERS 

2012 Walk to Defeat ALS 

Thank you so much for participating in our Walk to Defeat ALS events!! We can’t tell you how much we 

appreciate your dedication and support. We are busy counting and entering the money that was raised at our Fall 

Walk to Defeat ALS events, so keep checking your Personal Pages to see the totals continue to grow! We will 

have more ―final‖ numbers in our next issue of The Informer. Our estimated totals are as follows: 

Walk Event 

Number of 

Participants 

Money Raised 

Mankato Walk to Defeat ALS 574 $55,252 

Grand Forks Walk to Defeat ALS 199 $17,838 

Bismarck Walk to Defeat ALS 262 $22,105 

Minot Walk to Defeat ALS 235 $30,845 

Fargo/Moorhead Walk to Defeat ALS 380 $46,994 

Rochester Walk to Defeat ALS 500 (estimated) $48,000 

St. Cloud Walk to Defeat ALS 900 (estimated) $59,000 

Minneapolis (Twin Cities) Walk to Defeat ALS 2,000 (estimated) $285,000 

Sioux Falls Walk to Defeat ALS TBD TBD 

You still have one more opportunity to participate in a Walk to Defeat ALS event! 

Sioux Falls -------------------------------- Saturday, October 20 -------------------- The Empire Mall 

Registration begins at 9 a.m., with the Walk beginning at 10 a.m. 

There’s still time to donate to a Walk to Defeat ALS event. If you have donations to submit, or would like 

to make a personal donation to a Walk, checks can be mailed to the address below. Please be sure to 

indicate the city name of the Walk that should receive credit. 

The ALS Association 

Attn: Walk to Defeat ALS 

333 Washington Ave. N, Ste. 105 

Minneapolis, MN 55401 

Do you have questions Call your Walk Coordinator! For Minnesota Walks, contact Kristina 

(kristina@alsmn.org or 888-672-0484). For North Dakota Walks, contact Chelsea (chelsea@alsmn.org or 701- 

235-2399). For Sioux Falls, you may contact Chelsea. 


THE 



18 th Annual Larry Sing Golf Classic 


ighteen years ago Larry Sing sat around his kitchen table with close friends in the agriculture 

E industry discussing how the group could bring people together for a common cause: to raise 

money for The ALS Association and help fight the disease that was slowly taking his life. On Monday, 

August 27, more than 220 men and women from the agriculture community joined together to honor 

Larry and raised funds for the tournament and program that bear his name. More than $106,000 was 

raised in the event this year for The ALS Association, MN/ND/SD Chapter, bringing the eighteen year 

total to more than $1,256,000. 

―Larry Sing lost his battle with ALS in 1997, but this Golf Classic has kept his legacy alive,‖ stated Linda Lorentzen, Vice 

President of Care Services and Interim Executive Director. ―Larry wanted all those with ALS facing difficulty speaking to know 

that there were other ways to communicate. He was masterful at using technology himself and wanted others to have the same 

benefits. This golf classic is a tribute to Larry Sing’s dedication to The ALS Association and to the patients and families 

fighting ALS.‖ 

The event is planned with the help of a volunteer committee, with members from the various specialties of the agriculture 

community. The eleven-member committee dedicates time and talent to the event, helping with everything from logistical 

planning to securing teams, sponsors and auction items. 

The tournament is held in memory and honor of Larry Sing, who died from ALS in 

1997, about five years after his diagnosis in 1991. Larry, an important member of the 

agricultural industry, was a man who exemplified the chance of turning adversity into 

opportunity. Those who knew Larry when he was still strong and healthy will tell you 

that he always approached challenges with a vengeance; that he was boldly passionate 

about those things that mattered to him and that his sense of integrity was deep and 

unwavering. Those who met Larry after his diagnosis with ALS, would describe 

exactly the same man. 

Larry’s family continues to participate in the tournament each year. This year, Shawn Sing, Larry’s wife, addressed the group for 

the first time. When speaking of Larry’s ALS diagnosis, Shawn stated, ―After spending some time grieving over all that he was 

faced with losing, he decided instead to focus on what he could still try to accomplish and we joined the ALS Board. When we 

found out the cost of devices to aid those losing their speech was prohibitive, Larry was determined to find a way to raise 

money to help fund the cost. For those of you who knew Larry, or know what it takes to make it in the agri-business 

community, you will understand that the thought of losing his voice and being unable to express himself was especially difficult. 

He reached out to his friends in the agri-business community and the first committee was formed to run this tournament 18 

years ago. These past and present hard-working and dedicated committee members along with the support of all the 

participants over the years have kept this tournament going long past Larry’s wildest expectations.‖ 

Larry’s vision was to develop a communications program which would provide alternative communication devices to people 

with ALS when they lose the ability to speak. Together with former Minnesota Twins great, Kent Hrbek, they started what is 

now called the Hrbek-Sing Communication and Assistive Device Program. There is an ever increasing demand for this program 

having grown from serving 80-100 people in 2001 to now serving more than 240 people over this past year. This program is 

possible in part by the funding from the Larry Sing Memorial ALS Golf Classic. 

Dollars raised through this event help to support programs and services for people with ALS and their families throughout 

Minnesota, North Dakota and South Dakota. The 2012 Honorary Chair, Dennis Wendland – retired Senior Vice President of 

Oilseed Processing with CHS, shared his appreciation of the support of all who attended. Wendland lost his brother, Merlin, to 

ALS in October 2008. 

Larry would undoubtedly be proud not only of the success of the event, but of the effort of his colleagues to put business aside 

for a day and work together for a common goal. For those of us left behind to continue the quest, Larry’s spirit lingers not as a 

whisper, but as a roar. It reminds us to always live with passion and compassion, to find our purpose and with all the courage 

we can muster, ignore the limits. 

For more information regarding the Sing Golf Classic, please contact Chelsea at chelsea@alsmn.org or 701-235-2399. 


MN/ND/SD 



THE 


The ALS Association SuperHero 5k/10k Dash 

n just under two weeks hundreds of caped crusaders will be hitting the pavement around Lake Phalen in St. Paul to help 

I defeat a true villain – ALS! Join us on October 13 th for the ALS SuperHero 5k/10k Dash in support of The ALS 

Association, MN/ND/SD Chapter! Participants are invited to dress up in the attire of their favorite superhero! Registration is at 

9:00 a.m. and the walk/run will begin at 10:00 a.m. Let the countdown begin! 

To join our league of heroic dashers, register online at 

www.alssuperherodash.com. From now until October 12 th , registration costs 

$30 for the 5k and $35 for the 10k. Walk up registration is $35 for the 5k and 

$40 for the 10k. In addition to the entry fee, we are encouraging runners to 

fundraise to support the programs and services provided by the Chapter. For 

more information on fundraising, check out our website noted above or contact 

Kristina at kristina@alsmn.org or 888-672-0484. 

Be a superhero and join us in raising money to help those individuals and their families who are battling ALS. 

Black Woods Blizzard Tour 

T he 14th Annual Black Woods Blizzard Tour will be January 30 – February 2, 2013, in northern Minnesota. The ride is an event 

welcoming experienced riders, 21 years and older. Riders depart Proctor Thursday morning and ride to Fortune Bay. After a good 

night’s rest, riders leave Fortune Bay and head to Two Harbors. On Saturday, riders hit the last leg of the trail for Proctor—successfully 

riding nearly 400 miles. Each rider is asked to raise $1,200 in donations which benefit ALS care services programs and research 

initiatives. Prizes will be awarded to the top fundraisers. There are many ways to participate: ride in the event, sponsor the event, donate 

to a rider, attend the Saturday Celebration Dinner or make an auction donation. For more information about the Tour, please visit our 

website at www.blackwoodsblizzardtour.com or contact Sandy at 888-672-0484 or sandy@alsmn.org. 

10th Annual Dinner of Champions—A Gala Event 

W e are pleased to announce our 10th Annual Dinner of Champions – A Gala Event! This event, taking place on Thursday, 

November 1 st at the Minneapolis Marriott Northwest in Brooklyn Park, helps to raise funds 

to support the programs and services offered by our Chapter to people with ALS and their families in 

our service area, and to fund research. We must all come together to confront this disease, which is 

why the theme of this year’s gala will be ―Together we care…Together we conquer.‖ Your caring 

support of this event will help people with ALS as they face the daily challenges of living with this 

disease. With the funds raised for research, we hope to one day conquer ALS by finding the cause and 

a cure for this disease. 

So, don your elegant evening attire and join us in honoring American Family Insurance for their continued support of the mission of The 

ALS Association. Individual gala tickets are $225 and table sponsorship opportunities are also available. This will be an evening of 

excitement and fun competition as guests try to outbid each other on an assortment of appealing silent auction items. This year will bring 

a technological edge to the silent auction as ClickBid will allow guests to place bids from their internet 

capable phones or other electronic devices. After cocktail hour, guests will enjoy a sumptuous dinner 

and a moving program. The evening will conclude with a high-energy live auction and dueling piano 

entertainment. If you are interested in learning more about the Dinner of Champions, please contact 

Kristin at the Chapter office at 888-672-0484 or kristin@alsmn.org, or visit 

www.alsdinnerofchampions.com. 


THE 




John Christianson’s Story 

Written by his daughter Joy Scheil, 

current Dinner of Champions committee member 

appy Monday! Anyone who knew my dad, John Christianson, knows he was notorious for his ―Happy Day of the 

H Week‖ greeting and always said it like he’d just won the lottery. One of the most positive, happiest people you could 

meet, he was known for brightening anyone’s day with his infectious positivity and happy demeanor. According to him, he 

never worked a day in his life, because his job was not work to him. He truly was Mr. Positive. 

In February of 2009, my dad noticed some difficulty with his fingers when starting the snow-blower, not long after he started 

experiencing some twitching in his biceps. After several months of tests, doctor visits, and a lot of nervous waiting, he was 

diagnosed with ALS in July of 2009, at the age of 65. I was with my parents that day and will never forget hearing the 

diagnosis. While ALS had been mentioned as a possibility, I never considered it something that could actually hit our family. 

To me it was just a rare disease that was supposed to hit people I didn’t know. 

The path that followed my dad’s diagnosis is one that I 

wouldn’t wish on anyone. There is no easy way to watch 

helplessly as someone you love becomes a prisoner in 

their own body. Equally difficult was seeing my mom 

selflessly give up her own life to become a 24-hour 

caregiver. It was painful to see her try to balance the 

demands of caring for my dad with taking care of herself, 

being a mom, and being a grandma. While we had plenty 

of family support, there was little family that lived nearby 

to help during the week. 

The Jack Norton Family Respite Program allowed my 

mom to get a few hours a week to go run errands, 

schedule appointments, or just take a nap. It gave her a 

John Christianson 

much needed break and it gave the rest of the family a 

small sense of relief to know there were other people to call on. My dad also enjoyed the company of the Home Health 

Aides, especially as his time outside of the house became limited. 

In addition to the Respite Program, we also received a communication device and several loan pool items through The ALS 

Association. As a disease with no treatment or cure, doctors are limited in what they can do. To me, this is why The ALS 

Association is such a vital resource to those living with ALS. This organization is the lifeline that helps people with ALS and 

their loved ones to navigate the many stages of the disease. 

On September 24, 2011, while enjoying a beautiful fall day with family, my dad peacefully left his ALS battle behind at the 

age of 67. His spirit is present in the lives that he touched and his passion to help others is what has inspired me to volunteer 

with The ALS Association. I see no better way to honor my dad than to continue his mission of helping people. 

My current involvement is volunteering as a committee member for the Dinner of Champions Gala. This annual black tie 

event is a way for people to come together to continue the fight against ALS. This year’s event is Thursday, November 1st, 

at the Marriott Northwest (formerly the Northland Inn) in Brooklyn Park. Anyone interested in fighting ALS is encouraged 

to attend. The theme for this year’s event is ―Together we care…Together we conquer‖ because, as my family learned, 

living with ALS really does require everyone to come together. 


MN/ND/SD 


THE 


COMMUNITY FUNDRAISERS 

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

please contact Kristin Skaar at the Chapter office at kristin@alsmn.org or 888-672-0484. 

lease join us in 2012 for the upcoming Community Fundraisers that have been set up as third party events to benefit 

P 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 or check out our event listing at www.alsmn.org. 

Don’t Miss the Bus! 

After Debbie Carriveau’s husband, Jeff, passed away from ALS in August of 2003 she was looking for a fun and meaningful 

way to give back. Several years later, in the fall of 2007, Debbie and her sister, Karen Erdmann, were able to do just that 

when they started the Pink Bus Mystery Trips as a fundraiser for The ALS Association. 

The Pink Bus Mystery Trips provide getaway trips for women in Fargo, North Dakota and surrounding areas. These trips 

bring together women of all ages for a fun and unique experience. Mystery Trips are just that—A mystery! Participants don’t 

know where they’re going, what they’ll be doing or what will be for dinner. Each trip is planned with a variety of stops and 

activities. They intentionally stop at interesting places that might usually be passed by with the comment "we should stop 

there sometime". These trips are about the journey and getting there is half the fun! Learn more at www.thepinkbus.net. 

October 20st – 21st – Mystery Trip 

October 27th – 28th – Mystery Trip 

November 17th-18th – Holiday Trip 

December 1-2 – Holiday Trip 

For more information or if you have any questions or to sign up for a Pink Bus Mystery Trip feel free to contact Debbie or 

Karen at pinkbustrips@aol.com. 

Give to the Max Day: Thursday, November 15 

The ALS Association, MN/ND/SD Chapter will be participating in Give To The Max Day again this year. This is a great 

opportunity to support our Chapter as well as be a part of the largest giving day in Minnesota! 

Give to the Max Day is a day for Minnesotans to come together to raise as much money as possible for nonprofits and 

schools in 24 hours – starting at midnight on November 15, 2012. For more information click on the following link. 

http://webmn.alsa.org/site/PageServerpagename=MN_9_Connections_2012_Oct_Art4 


THE 



The ALS Association, Minnesota, North Dakota, South 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, South Dakota Chapter 

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

or 

P.O. Box 10805, Fargo, ND 58106-0805 

E-mail: info@alsmn.org 

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

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

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

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

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

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

STAFF 

Mardie Blessing ______________________ Pre OT Intern 

Sharon D’Souza __________________ Web Administrator 

Nancy Felicetta __ Care Services Administrative Assistant 

Chelsea Guggisberg________ Special Events Coordinator 

Kristina Hedberg __________ Special Events Coordinator 

Sandy Judge _____________ Special Events Coordinator 

Lisa Kronk _______________ Care Services Coordinator 

Linda Lorentzen _________ Interim Executive Director, 

Vice President of Care Services 

Lourdes McGovern __________________ Office Manager 

Cheryl Meyers ____________ Care Services Coordinator 

Jennifer Myhre ____________ Care Services Coordinator 

Michelle Nayar _____________ Vice President of Finance 

Nita Schanback ______________ Database Administrator 

Kristin Skaar ______________ Special Events Coordinator 

Julie Smith ____________ Vice President of Development 

Anne Supplee _____________ Care Services Coordinator 

Stephanie Tyree _______________ Volunteer Coordinator 

https://www.facebook.com/ALSAssociationMNNDSD 

Twitter@ALSA_MNNDSD 

BOARD OFFICERS 

Amy Brachio ___________________ President 

Joe Driscoll ________________ Vice President 

Philip Albert ___________________ Treasurer 

Mary Sue Ohlhauser ____________ Secretary 

BOARD OF DIRECTORS 

Austin Caves Scott Kirkland Kirk Pumphrey 

Karen Dahlen David Lamm Mike Ralston 

Michelle Dove Bill McCarthy Gayle Sit 

Dale Freking Mojdeh Poul Howard Zack 

HONORARY DIRECTORS 

Kent & Jeanie Hrbek 

David Kolquist 

Raise Awareness, Wear a 

Fighting Lou Gehrig's Disease Wristband 

Contact the office at 888-672-0484 or 

lourdes@alsmn.org. 

Order through our website 

Cost is $1 each plus shipping.

INFORMER - ALS Association - Minnesota Chapter

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