A NOTE FROM THE CHAPTER CARE SERVICES DIRECTOR
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.
Care Services Coordinators are available to answer questions, help navigate healthcare options and programs, provide resources and information regarding insurance and disability, and to simply be there for support. The Care Services Coordinators can connect with you in any way you feel most comfortable — in person, by phone or by email. They’ll also work to identify other community resources, ALS-specific or otherwise, that can provide additional support.
This website provides information on all the services we offer, but it’s no substitute for a personal connection. We urge you to call or email us to set up an introductory appointment with a member of the Care Services team — whether we meet in the Chapter office, your home, or any other location you choose. Whatever you need, at any stage along the way, we’re here for you.
Angie Pereira, BSN, RN
Care Services Director
ABOUT CARE SERVICES
The ALS Association Wisconsin Chapter is here to guide and assist you throughout your journey with ALS. Below are brief descriptions of the full range of services we can provide, followed by a staff listing.
These programs and services are available to individuals diagnosed with ALS who are registered Chapter members. You can register by clicking on the link below or by calling the Chapter Office and speaking to a member of the Care Services Staff at 414.763.2220. If registering online, a member of the Care Services Staff will contact you to provide additional information after your registration form is received.
YOU MUST BE REGISTERED TO UTILIZE CHAPTER SERVICES!
ALS Support Groups
To help cope with this devastating disease, the Chapter provides monthly support group meetings for individuals with ALS, families and caregivers. These meetings are upbeat gatherings that focus on coping with ALS and its challenges, and offer the opportunity to share information and resources that help meet those challenges. The meetings provide an empathetic, supportive environment where tears, smiles and laughter are all part of the sharing. For specific information on support group days/times/locations please click here.
ALS Care & Research Symposium
The Chapter Care Services Staff is also continually looking at ways to reach out and provide support to the persons living with ALS and families they serve. One of the ways this is done is providing special educational programs. The Chapter organizes an annual ALS Care and Research Symposium, which is held each spring to provide information on care management and services as well as updates in the research area. Special keynote speakers are invited to share the most up-to-date information with our Chapter members. If you would like to be on the mailing and email lists for this special event, please contact Kathleen Huevler at 920-288-7095 or [email protected].
The Chapter maintains an inventory of augmentative/alternative communication devices ranging from low tech/communication boards to computerized devices with synthesized speech. The devices are loaned through the Chapter in partnership with area Speech Therapists, who work directly with individuals with ALS and provide evaluations and training on the devices. For more information on Communication Devices or if you need information or assistance in getting an evaluation for a communication device, please contact Angie Pereira at 414.817.1541 or [email protected]
Equipment Loan Program
The Chapter maintains an inventory of gently used durable medical equipment and assistive devices that can be loaned to registered Chapter members who have no or limited insurance coverage or ability to obtain the equipment, at no cost. If you have questions regarding the Equipment Program, please contact David Ferrie, Equipment Program Coordinator at 414.207.3911 or [email protected]. To view a general listing of equipment available click here.
ALS Certified Clinic
The ALS Clinic at Froedtert Hospital and the Medical College of Wisconsin is the 26th ALS Association Certified Treatment Center of Excellence in the country, providing neurological diagnostics and imaging, as well as access to the services of a team of highly trained health care professionals specializing in ALS. Under the medical direction of Dr. Paul Barkhaus and Dr. Dominic Fee, the ALS Clinic Team consists of a Nurse Clinic Coordinator, Social Worker, Dietitian, Speech/Swallow Specialist, Physical Therapist, Occupational Therapist, Respiratory Therapist, Chaplain, Child Life Specialist and Wisconsin Chapter Clinic Liaison. For more information regarding the ALS Clinic please contact a member of the Care Services Team at 414.831.3989 or [email protected]
Grant reimbursement program
The Brian Trinastic Memorial Grant Program provides reimbursement to individuals diagnosed with ALS for costs not covered by insurance and associated with communication, medical expenses, home modifications, and transportation needs.
Specific program information and the request for funds form is available here.
The grant program has helped many families to offset the high out of pocket costs associated with ALS. The program depends on generous donations to be sustained. Donations can be made directly to the Brian Trinastic Memorial Grant Program.
If you have any questions regarding the Brian Trinastic Memorial Grant Program, please contact Kathleen Huevler at 920-388-7095 or [email protected].
WISCONSIN CHAPTER CARE SERVICES STAFF
Angie Pereira, BSN, RN
Care Services Director | 414.817.1541| [email protected]
Robin Stanczyk RN
Care Services Coordinator | 414.831.3989 | [email protected]
Mary DeFrain-Jones, CSW
Care Services Coordinator/Froedtert ALS Clinic Social Worker | 414.831.3990 | [email protected]
Equipment Program Coordinator | 414-207-3911| [email protected]
Kristy Sharp, Care Services Coordinator
608.235.4091 | [email protected]
Diane Fergot, CSW
Care Services Coordinator for Fox Valley, Lake Shore & South Central WI Counties | 920.279.4449 | [email protected]
Kathleen Huevler, Care Services Program Coordinator
920.288.7095 | [email protected]
Our staff is here Monday through Friday to answer any questions you may have. Please don’t hesitate to call or e-mail us for more information.