The 17th Annual
ALS Association
Wisconsin Chapter
ALS Care & Research Symposium
HOPE THROUGH KNOWLEDGE
Our Sponsors
To visit a sponsor's homepage please click the home button below their name
For videos from our sponsor's please click the play button below their name
Special Thanks | Mary Ellen O'Donnell & David Ferrie
Local Research
FEATURED ALS EXPERTS
Amyotrophic Lateral Sclerosis (ALS)
Questions or Comments for Dr. Fee?
Please use the "Contact Us" form on the last page/bottom of this website. Thank you!
Dr. Dominic Fee
Dr. Fee is a Neurologist, Associate Professor of Neurology at the Medical College of Wisconsin and Vice Chair of Clinical Affairs at Froedtert Hospital. He is the Co-Director of the Certified ALS Treatment Center at Froedtert Hospital and Medical College of Wisconsin and the Director of Neurology at the Certified ALS Treatment Center at the Milwaukee VA Medical Center.
Signal Analysis Research
Dr. Paul Barkhaus
Paul E. Barkhaus, MD, FAAN, FAANEM
Professor of Neurology and Physical Medicine & Rehabilitation
Director, Neuromuscular and Autonomics Program
Codirector and Founder, ALS Program
ALS Clinical Trial Process
Herman Green
Mr. Green was diagnosed with ALS in October 2017. In 2018, he attended NEALS Clinical Research Learning Institute. For the past two years he has done ALS-related work for the U.S. Army Medical Research Command, the American Academy of Neurology, and is involved with the ALS Association’s Wisconsin Chapter. He attends ALS support groups in both Madison and Milwaukee. Mr. Green is a licensed engineer and licensed architect.
Specific Froedtert & The Medical College of Wisconsin
Research Updates, Coming Soon!
Wisconsin Care Team
The ALS Association Wisconsin Chapter
Care Services Team
The Care Services department of the ALS Association Wisconsin Chapter offers supportive programs and services free of charge to individuals and families living with ALS throughout the state. The Care Services team is here to provide support during the difficult time of change and uncertainty. We work directly with individuals diagnosed with ALS, as well as their families and friends, to provide guidance, information and resources through our Care Services programs. Our strong partnerships with service providers and other organizations statewide ensure support for all Wisconsin individuals and their families living with ALS.
Angie Pereira, Care Services Director
Angie received her Bachelor of Science degree in Nursing from Western Governors University. In 2003, Angie began her nursing career at the Clement J. Zablocki Veterans Affairs Medical Center (Milwaukee) in Inpatient/Internal Medicine. Over the years, she also gained additional experience in Primary Care and Spinal Cord Injury and ended her tenure at the VA in the Neurology/ Physical Medicine and Rehabilitation Clinic. During her last 5 years at the VA she served as the RN Clinic Coordinator for the ALS Multidisciplinary Clinic and Case Manager of the ALS patient population. While working in these roles Angie quickly developed a passion for the ALS Community and their unique physical and emotional needs. This was the beginning of her collaboration with the ALS Association. Angie was integral in the process of obtaining the Certification as a Center of Excellence from the ALS Association for the VA. During that time Angie worked closely with the ALS Association, Wisconsin Chapter and developed an even deeper appreciation for the organization. In 2019, Angie joined The ALS Association Wisconsin Chapter and is honored to be a part of the Care Services Team as the Director of Care Services. She remains dedicated to providing advocacy and support for the ALS Community.
Robin Stanczyk, Care Services Coordinator
Robin has been a Registered Nurse (RN) her entire adult life. She practiced both in Rhode Island and WI. She has worked in a variety of medical settings throughout the years, including ICU, floating throughout multiple hospitals on an as needed basis, and several home care agencies. While Robin’s mother was living with ALS, Robin volunteered and assisted with the SE WI ALS Chapter Equipment Loan Closet from 2000 to 2007. Prior to joining the ALS Association Wisconsin Chapter in 2008 as a Care Services Coordinator, Robin was employed at Froedtert Hospital on the Neurosciences Floor working with rehab of patients with brain injury, stroke, ortho, transplant and cardiac, as well as floating to the spinal cord unit. As a caregiver, Robin is passionate about helping others who are impacted by ALS, as she experienced and lived through her mother’s journey with ALS. Robin is the Clinic Liaison for the ALS Association Certified Center of Excellence at both the Froedtert Hospital/Medical College of Wisconsin and at the Clement J. Zablocki VA Medical Center. Robin facilitates a monthly ALS Caregiver Support Group. She currently serves the following counties: Waukesha, Jefferson, Ozaukee, Washington, Dodge, Columbia, Fond Du Lac, Sheboygan, Marinette, Forest, Florence, Langlade, Lincoln, Oneida, Vilas, Price, Ashland and Iron.
Mary Defrain-Jones, Care Services Coordinator
Mary graduated from UW-Milwaukee with a Bachelor of Science degree in Social Work. She worked with developmentally disabled adults for 17 years before moving on as a Bereavement Coordinator with a local hospice agency for 6 years. She has been with the ALS Association WI Chapter for 8 years and continues to enjoy her work with this special population. Mary facilitates the Milwaukee Area ALS Support Group and is the Social Worker at the Froedtert and Medical College of Wisconsin ALS Clinic, a Certified Treatment Center of Excellence as recognized by the ALS Association. She currently serves the counties of: Kenosha, Milwaukee, Racine, and Walworth.
Kristy Sharp, Care Services Coordinator
Kristy received her Bachelor of Science degree in Allied Health Biology from Winona State University in Minnesota. Following her undergraduate degree, she moved to Madison and worked in Research, and as a Pathologists’ Assistant in Surgical Pathology. She was presented with a unique opportunity to join the WI Chapter’s Care Services team in late 2020. She feels incredibly blessed to work with such an incredible team and organization who share the same mission for patient focused care as she does. Kristy facilitates the Madison Area Support Group and attends the University of Wisconsin ALS Multidisciplinary Clinic. She currently serves the following counties: Adams, Crawford, Dane, Grant, Green, Green Lake, Iowa, Juneau, Lafayette, Marathon, Marquette, Monroe, Portage, Richland, Rock, Sauk, Vernon, Waushara, and Wood.
Alyson Johnson, Care Services Coordinator
Alyson graduated from Fox Valley Technical College in 2015 with an Occupational Therapy Assistant AAS degree. She obtained her license and was certified as a COTA shortly after. She worked at Options for Independent Living for 6 years providing information, advocacy, and resources to people with disabilities in NE WI before accepting a position with the ALS Association. Alyson is excited to share her unique abilities and resources within her new position. Alyson facilitates the Northeast Support Group and assists in managing and coordinating DME equipment from the ALS LEND closet in Appleton. She currently serves the following counties: Brown, Calumet, Kewaunee, Manitowoc, Menominee, Oconto, Outagamie, Shawano, Waupaca, and Winnebago.
Diane Fergot, Care Services Coordinator
Diane received her BS in Social Work from Kansas State University in 1982 and spent 30 years working for the State of Wisconsin in the Department of Corrections and Department of Health Services. In February 2000 she started the Fox Valley ALS Support Group in Oshkosh due to a local need; this was inspired by her friend, Connie, who was living with ALS at the time. She retired from state service in 2012 and joined the WI Chapter as a Care Services Coordinator. She was grateful for this opportunity to expand the support she provided to area families as she now covered all of the Fox Valley, Lakeshore, and Central WI and provided more comprehensive services. She started a quarterly Lakeshore Area ALS Support Group and a quarterly Caregiver Dinner in Appleton. In 2021 she moved to Eau Claire and now facilitates the Northwest Support Group. She currently serves the following counties: Barron, Bayfield, Buffalo, Burnett, Chippewa, Clark, Douglas, Dunn, Eau Claire, Jackson, La Crosse, Pepin, Pierce, Polk, Rusk, Sawyer, St. Croix, Taylor, Trempealeau, and Washburn.
David Ferrie, Equipment Program Coordinator
Dave started with ALSA in 2015 to organize and establish the equipment loan program. He took the job because he didn’t feel like retiring. Regarding his divergent and eclectic career and interests, Dave describes himself as a generalist. He has paired wines for dinner parties and tracked witnesses for law firms. He has splinted femur fractures on an ambulance and delivered a second act Shakespeare soliloquy on a stage; he has helped people find meaning and purpose in their lives and manned the short order grill at a lunch counter. But, Dave says, “this is the best, most rewarding job I’ve ever had.”
Kathleen Huevler, Program Coordinator
Kathleen is a CPA and joined the Wisconsin Chapter in 2014 as Finance Manager, following two years of volunteer work. She was drawn to work for the chapter following her dad’s journey with ALS. After 7 years in the finance role, Kathleen joined the Care Services team, where she felt her contribution could be more impactful to those battling ALS and the overall mission of the chapter. Kathleen is largely responsible for the Brian Trinastic Memorial Grant Program and the Augmentative Communication Program and is happy to assist with any matters pertaining to the chapter.
ALS Association
Certified Treatment Centers of Excellence
Froedtert Hospital & Medical College of Wisconsin
and
Milwaukee VA Medical Center
Dominic Fee, MD
Dr. Fee is a Neurologist, Associate Professor of Neurology at the Medical College of Wisconsin and Vice Chair of Clinical Affairs at Froedtert Hospital. He is the Co-Director of the Certified ALS Treatment Center at Froedtert Hospital and Medical College of Wisconsin and the Director of Neurology at the Certified ALS Treatment Center at the Milwaukee VA Medical Center.
David Shirilla, DO
Dr. Shirilla, is Assistant Professor of Neurology and Neuromuscular Medicine at the Medical College of Wisconsin. He is the Co-Director of the Certified ALS Treatment Center at Froedtert Hospital & Medical College of Wisconsin and the Director of Neurology at the Certified ALS Treatment Center at the Milwaukee VA Medical Center.
Froedtert Hospital & Medical College of Wisconsin
Contact
Stacey Martinetti, RN,
Clinic Coordinator at 414-805-8710.
Clinic Coordinator: Stacey Martinetti, RN
Physical Therapist: Chris Wipperman, PT, NCS
Occupational Therapist: Deb Romoren, OTR
Speech Therapist: Libby Kelley, CCC-SLP
Dietitian: Michelle McDonagh, RD, CD
Respiratory Therapist: Michelle Werner, RRT, RPFT
Pharmacist: Michelle Maynard, Pharm D, BCPS
Chaplain: Jim Durnil, BCC, M. Div
Child Life Specialist: Heidi Miranda, MS, CCLS
Research Coordinator: Marie Mejaki, BA, CCRC
ALS Assn Care Services Coordinator: Robin Stanczyk, RN
Social Worker: Mary DeFrain-Jones, CSW
Clinic Coordinator: Doris Lozano, RN
Physical Therapist: Katie Schultz, DPT, ATP
Occupational Therapist: Bobay VanGroll, OTR/L
Speech Language Pathologist: Stephanie Rasmussen, MS, CCC-SLP
Speech Language Pathologist: Laura Kessler, MS, CCC-SLP
Registered Dietician: Meredith Peters, RD
Registered Dietician: Elizabeth Zenke, RD
Respiratory Therapist: Ellen Newman, BS, RRT
Respiratory Therapist: Tina Simpson, BSN, RRT
Respiratory Therapist: Jodi Morgan, BS-RRT, CPFT
Psychology: Deana Wilson, PsyD
Social Worker: Martha Lavin, MSW, LCSW
ALS Assn Care Services Coordinator: Robin Stanczyk, RN
Administrator, PVA Milwaukee: Linda Roberts
Officer, PVA National: Eric Gonzales, NSO3
Milwaukee VA Medical Center
Doris Lozano, RN,
Clinic Coordinator at 414-384-2000, Ext 41909
Contact
Affiliated Clinics
UW Health University Hospital
ALS Clinic
Stephanie N. Gardon, MD
Dr. Gardon is a neurologist at the University of Wisconsin School of Medicine and Public Health who specializes in neuromuscular disorders.
She is the Co-Director of the ALS Multi-Disciplinary Clinic at University Hospital in Madison.
Nassima Baba-Ahmed Fertikh, MD
Dr. Fertikh is a neurologist and a clinical assistant professor at the University of Wisconsin School of Medicine and Public Health specializing in amyotrophic lateral sclerosis and other motor neuron diseases. She is the Co-Director of the ALS Multi-Disciplinary Clinic at University Hospital in Madison.
Michael Hansen, MD
Dr. Hansen is a neurologist and a clinical assistant professor at the University of Wisconsin School of Medicine and Public Health specializing in neuromuscular disorders, specifically ALS and Muscular Dystrophy.
Andrew J. Waclawik, MD
Dr. Waclawik is a neurologist and professor of neurology at the University of Wisconsin School of Medicine and Public Health. He specializes in neuromuscular disorders, specifically ALS and Muscular Dystrophy.
Melissa Mason, PA-C
Melissa is a physican assistant at the University Hospital, Neuromuscular Disorders Clinic in Madison. She specializes in neuromuscular disorders, specifically ALS and Muscular Dystrophy.
Palliative Care Specialist: Jessica M. Baker, MD
Clinic Coordinator: Traci Socha, RN, BSN
Physical Therapist: Laura Guse, PT
Physical Therapist: Katlin Nimm, PT
Occupational Therapist: Peggy Nied, OT
Swallowing Specialist: Molly Knigge, MS CCCSLP, BRS-S
Speech Language Pathologist: Stevie Marvin, SLP
Communications Specialist: Catherine Kanter, MS, CCC-SLP
Clinical Nutritionist: Megan Grassl, MS, RDN, LD, CD
Clinical Nutritionist: Melissa Phillips, MS, RDN, CD
Respiratory Therapist: UW Health Respiratory Therapy
Social Worker: Ellen Sullivan, MSW, APSW
Social Worker: Lindsay Everly, MSSW, APSW, APHSW-C
ALS Assn Care Services Coordinator: Kristy Sharp
Contacts
Traci Socha, RN, Clinic Coordinator at 608-263-5442
Ellen Sullivan, MSW, APSW, Social Worker at 608-720-2831
Lindsay Everly, MSSW, APSW, APHSW-C at 608-826-6700
Gundersen Health System
ALS Clinic
LaCrosse, WI
Michael A. Leone, MD
Dr. Leone is a neurologist at Gundersen Health System in Lacrosse. He is Director of Muscle and Nerve Center, specializing in neuromuscular disorders and motor neuron disease.
Contact Barb Omitt-Dorshorst, MSW, Social Worker, 608-775-9000
Mission Spotlight
Take in as much joy as you can whenever and however you can.
You may find it in unpredictable places and situations.
-Morrie Schwartz, Brandeis Professor and subject of “Tuesdays with Morrie”
The Spirit of Our Work
Since 1987, the ALS Association Wisconsin Chapter has been offering support, information and resources to Wisconsin individuals and families affected by ALS .
We've learned that the real heroes in the battle with ALS are those with ALS, their families and friends. Their determination to love and support each other is profoundly moving and we stand in awe of their strength and commitment to their loved ones.
It is our honor to present this video highlighting the ALS heroes we have worked with over the past years.
Many thanks to those who have provided the photos and details about their loved ones.
ALS Conversations
The ALS Association Wisconsin Chapter partnered with the University of Wisconsin-Milwaukee at Waukesha for this project. The Care Services team collaborated with Steve and Johnny who are in the drama/theater program at UWM-Waukesha. With the help of Care Services, Steve and Johnny were partnered with two people with ALS from our Wisconsin Community. The goal of this project was collaborative story telling. Steve and Johnny wanted to tell our member's stories, by taking on their personas and mannerisms and turning them into a monologue.
"We both feel there was a powerful connection developed in this process to these gentleman. The interviews and conversations were very healthy and honest as these stories were shared. For me this journey taught me so much about compassion, dignity and personal identity. I welcomed the meetings as a chance to slow down and be present with the stories and experiences. We met approximately 5-6 hours over video with each of the guys. We then spent considerable time crafting and shaping the monologues prior to learning the pieces." -Steve Decker, Professor of Communication and Theatre at the University of Wisconsin Milwaukee
Ken Sina
Dave Eckhardt
Our Mission
The Amyotrophic Lateral Sclerosis Association is the ONLY national organization solely devoted to encouraging and funding research to discover the cause of and a cure for ALS. A nonprofit organization with a network of Chapters and support groups throughout the United States, The ALS Association also provides patient support, public awareness, legislative advocacy and education for health care professionals and the general public.
The ALS Association Wisconsin Chapter evolved from a local support group and became an official Chapter in 1987. The Fundraising and Care Services staff of the Wisconsin Chapter work together to raise much needed funds and provide services and support for our Chapter families. The staff is under the guidance of an energetic volunteer Board of Directors. In addition, dedicated volunteers and community partners provide invaluable support in all areas of the Chapter.
GOALS
-
Provide education, guidance, services and support to ALS patients, their families and their caregivers.
-
Promote public awareness.
-
Raise funds for ALS research.
-
Support the ALS Association Certified Centers and affiliated ALS Multidisciplinary Clinics throughout Wisconsin. Encourage the development of ALS specialty care to ensure the highest level of care is available to individuals living with ALS in Wisconsin.
Resources
The ALS Association WIsconsin Chapter is here to guide and assist you throughout your journey with ALS. This section is dedicated to some additional resources that we hope you find practical and beneficial.
Check out our YouTube Channel by clicking the link above. We have captured presentations during our support groups, everything from success stratgies for travel to communication and respiratory function for people living with ALS.
Our new patient packet has a wealth of information for someone newly diagnosed with ALS or anyone interested in connecting with our Chapter. Click the button above to view all of the materials.
Many resources are offered by local communities in Wisconsin and by the ALS National Office.
Click on the pictures and links below for more info information about each resource.
Free genetic testing and post-test counseling for people with ALS
More links to clinical trials & information on Tofersen
ALS Focus is a patient- and caregiver-led survey program that asks people with ALS and current and past caregivers about their needs and challenges. The goal is to learn as much as possible about individual experiences throughout the disease journey so that the whole ALS community can benefit.
The ALS Association's Living with ALS Resource Guides were created because of the rapidly expanding information and research in the clinical management of ALS. These cornerstone educational materials were designed to inform and educate people about ALS in a comprehensive and easily understood format. They address many of the common concerns and issues that face people living with ALS.
Every person living with ALS in the United States can enroll in the National ALS Registry! The National ALS Registry may be the single largest ALS research project ever created and is designed to identify ALS cases from throughout the entire United States. Most important, the Registry is collecting critical information about the disease that will improve care for people with ALS and help us learn what causes the disease, how it can be treated and even prevented.
Your local aging and disability resource center (ADRC) is the first place to go to get accurate, unbiased information on all aspects of life related to aging or living with a disability.
An independent living center (ILC) is a consumer-directed, non-profit organization that provides four core services: peer support, information and referral, independent living skills training, and person and systems advocacy.
Les Turner Foundation My ALS Decision Tool
You can use this tool to learn about your ALS treatment options and make important decisions about your care. As your disease progresses, your ALS care team may recommend treatments like breathing support or a feeding tube to help you stay as healthy and comfortable as possible. Even if you don’t have trouble breathing or eating on your own right now, it’s never too early to start planning ahead for your future care.
As you go through the tool, you’ll learn about some common ALS treatments, answer a few questions to help you think through what is most important to you, and get ready to talk with your ALS care team about your options.
End of Life Resources
The main goal of the Lifeworld Approach is to provide CARE and EDUCATION to those people with MOTOR NEURONE DISEASE, and their carer(s). Lifeworld provides access to an approach to care and education that has been developed through a ten-year research project and findings published in peer-reviewed journals. A temporal model of care has been developed to understand what is important for the person, whether that is their lived-through past, experienced present, or anticipated future. We are here to support communication for people at end of life.
How to make planning ahead easier with our guide to end of life care for MND.
End of life: a guide for people with motor neuron disease
If you have MND, you may have concerns about the later stages of the disease and what will happen with your future care. Our publication End of life: a guide for people with motor neurone disease has been developed to help you with end of life decisions, so that your wishes and preferences are known and respected. This comprehensive and candid guide provides guidance on how to plan ahead and communicate your choices to family and professionals.
For more information and resources, be sure to use these links
to our Wisconsin Chapter website, als.org/wisconsin
and
The ALS Association National website, als.org.
.jpg)
Melinda S. Kavanaugh, PhD, LCSW
Associate Professor and PhD Program Coordinator Social Work
Dr. Melinda S. Kavanaugh holds a PhD, MSW and an LCSW with years of clinical experience across health care settings and populations, including neurological disorders such as Huntington’s disease,
Amyotrophic lateral sclerosis (ALS), Parkinson’s disease and Alzheimer’s disease. Based on her clinical experience, Dr. Kavanaugh’s translational research focuses on an isolated population of caregivers - children and teens (“youth caregivers/young carers”).
What is Y-CARE and WHY is it so important?
Youth Research in Wisconsin.
For more information about the Y-CARE Program
visit their website below.
COMING SOON!!
CLICK
FOR MORE
INFO!!
Heidi Miranda, MS, CCLS
Heidi Miranda is a Certified Child Life Specialist at Froedtert Hospital and has been with the ALS program for 6 years. Heidi received her Bachelors degree in Child Life and Masters degree in Family Therapy from Edgewood College. Prior to her work at Froedtert Hospital and ALS program, Heidi worked as a Child Life Specialist at Children’s Hospital of Wisconsin for 10 years, Instructor/Advisor at Edgewood College and spent many years as a grief group facilitator for children.