Upstate New York Care Services
The ALS Association in Upstate New York is dedicated to providing resources and services to improve the quality of life for individuals and families coping with ALS, PBP, PLS and PMA. We offer a full range of care services to guide and assist you throughout this process.
Chapter staff are available Monday through Friday during regular business hours to answer any questions you may have.
315-413-0121
infony@als.org
To Register
To register with the ALS Association in Upstate New York, you MUST complete and submit the following three forms to our office by email/scan, fax, or postal mail. You may request paper copies from our office if you’re unable to download the forms below.
Upstate New York Care Services Staff
Rabecca Coulter
Managing Director, Care Services
Eastern New York
315-730-4601 | rabecca.coulter@als.org
Monday – Friday
Natalie Andrews
Care Services Coordinator
Central New York
315-632-5604 | natalie.andrews@als.org
Monday – Friday
Julie Garland
Care Services Coordinator
Western New York
716-860-1947 | julie.garland@als.org
Monday – Thursday
Laura Pelow
Care Services Coordinator
Finger Lakes Region
585-727-9153 | laura.pelow@als.org
Monday, Wednesday – Friday
Care Services and Programs
We offer the following care services and programs at present time. If you would like to utilize one of our services or participate in one of our programs, please contact your regional care services staff person as identified above.
Information and Referral Services
We work with individuals and families to help them connect to and navigate through our programs and vital community resources and services throughout New York State.
Home Visits
This program is designed as an opportunity to establish a relationship between the Association and families impacted by ALS. All patients and their families are eligible for a home visit by a member of our highly trained care services team. We complement the patient's medical care by helping them translate recommendation into reality in the home environment with the goal of assisting families to live with ALS as fully as possible.
Peer Support Groups
The purpose of our monthly Peer Support Group meetings is to offer both education and support. Group gives interested parties a chance to explore resources and opportunities within the community as well as time to talk with other members of the group who understand the unique challenges of living with and/or caring for someone living with ALS, allowing those in attendance to both offer and receive support. We typically invite professionals from the community to present on an issue of relevance to our group attendees for the first half of group and reserve the second half of group for conversation and sharing. We are currently offering all monthly support groups virtually. Please scroll down the page for additional group information.
James B. Howard, Sr. Memorial Library
We have books and DVDs for loan at the office on topics of interest about living with and caring for someone with ALS. Please click here for a list of the books and DVDs available through our loan library.
Robert Wright Memorial Equipment Loan Program
Through donation of used and purchase of new durable medical equipment (DME), we can provide patients many of the items they need for everyday living on loan. We carry small items, such as gait belts and transfer boards, all the way up to large or complex items, such as power wheelchairs and augmentative and alternative communication (AAC) including speech generating devices. We currently have loan closets in Albany, Buffalo, Rochester, and Syracuse. We encourage you to contact your regional care services staff person to see if the item you're looking for is available for loan prior to making any out-of-pocket purchases. Notably, our inventory is always changing. Additionally, it takes time for us to plan for delivery if the item requested is available and ultimately determined to be safe and appropriate for the individual’s use. We suggest reaching out to your regional care services staff person sooner than later with requests.
Assistance Program
This is a quarterly grant program designed to offset increasing disease-related medical, transportation and home modification costs through expense reimbursement. We are only able to reimburse for services that are not covered through traditional funding streams. If you wish to be considered for one of these grants, you must be registered with us and submit an application in the quarter you wish to be considered for. You can download the most up-to-date information and application below. Please read the program information thoroughly before submitting your application and contact our office with any questions. Notably, you must submit your application by the 15th of the final month in the quarter if you wish to be considered for that quarter (i.e. April 15, July 15, October 15, January 15). Many thanks to New York Life for helping to fund this program in FYE23!
Assistance Program Information and Application
Caregiver Respite Program
This a quarterly grant program designed to offset costs for respite services through expense reimbursement. We are only able to reimburse for services that are not covered through traditional funding streams. If you wish to be considered for one of these grants, you must be registered with us and submit an application in the quarter you wish to be considered for. You can download the most up-to-date information and application below. Please read the program information thoroughly before submitting your application and contact our office with any questions. Notably, you must submit your application by the 15th of the final month in the quarter if you wish to be considered for the quarter (i.e. April 15, July 15, October 15, January 15). Many thanks to Mitsubishi Tanabe Pharma America for helping to fund this program in FYE22!
Caregiver Respite Program Information and Application
ALS Care Connection
The ALS Association Care Connection is a private online calendar that can be used to support the entire family by organizing volunteers to take care of some of those tasks families describe as "falling through the cracks." It is a simple online tool that helps organize the community of people who want to help (e.g. family members, friends, neighbors, etc.) and coordinates their efforts more efficiently to support families living with ALS. Learn more about the Care Connection here.
ALS Peer Support Meetings
All monthly support groups are being held VIRTUALLY until further notice via Zoom. Zoom can be called into by phone or joined from your computer or tablet to access the platform's video conferencing and chat features. If you'd like to participate in one or more groups, please contact your region's care services staff person or our office (315-413-0121 or infony@als.org) for the group specific call-in and/or log-in information.
1st Tuesday – Peer Support Group (Western New York) from 6:30 pm to 8:00 pm
3rd Thursday – Peer Support Group (Central, Eastern, and Northern New York) from 6:30 pm to 8:00 pm
4th Thursday – Caregiver Support Group (All Area/Upstate New York) from 6:30 pm to 8:00 pm
Last Tuesday – Peer Support Group (Finger Lakes) from 6:30 pm to 8:00 pm
Local ALS Clinics and Centers
Syracuse, New York
ALS Research and Treatment Center
SUNY Upstate Medical University
Department of Neurology
90 Presidential Plaza, Floor 4
Syracuse, NY 13202
Phone: 315-464-4243
Medical Director: Eufrosina Young, MD
Note: Our Care Services Coordinator for the Central New York area participates in this weekly clinic, serving as Association liaison and patient advocate.
Syracuse VAMC ALS Clinic
800 Irving Avenue
Syracuse, NY 13210
Phone: 315-425-4400
Medical Director: Aiga Rakhesh, MD
Rochester, New York
ALS Clinic/Neurology Outpatient Clinic
Strong Memorial Hospital
1st Floor, AC-1
601 Elmwood Avenue, Box 673
Rochester, NY 14624
Phone: 585-275-2559
Medical Director: Peter Creigh, MD
Note: Our Care Services Coordinator for the Finger Lakes region participates in this monthly clinic, serving as Association liaison and patient advocate.
Buffalo, New York
Neuromuscular Disorders Center
DENT Neurologic Institute
3980 Sheridan Drive
Amherst, NY 14226
Phone: 716-250-2000
Medical Director: Bennett Myers, MD
Note: Our Care Services Coordinator for the Western New York region participates in this monthly clinic, serving as Association liaison and patient advocate.
Albany, New York
ALS Regional Center
St. Peter’s Hospital
19 Warehouse Row
Albany, NY 12205
Phone: 518-525-1629
Equipment Donations
The rapid progression of ALS creates a continuing need for durable medical equipment (DME) to assist patients in maintaining their mobility and independence. Through our Robert Wright Memorial Equipment Loan Program, your donation of DME will be made available to patients throughout Upstate New York free-of-charge.
Depending on storage space available we may be able to accept items such as rolling walkers, transport wheelchairs, manual wheelchairs, power wheelchairs, alternating pressure cushions or alternating pressure mattresses, speech generating devices, etc.
You must speak with one of the Upstate New York Chapter’s care services staff members FIRST to ensure we are able to take the item(s) you’d like to donate. Once we confirm that we’re able to accept the item(s), we can make the necessary arrangements for delivery or pickup.
Additionally, if you have any books, DVDs or other information you think may be helpful to other patients and/or caregivers, we encourage you to contact our office. If deemed appropriate, we can make those items available through our James B. Howard, Sr. Memorial Library.
Thank you for considering a donation to the Robert Wright Memorial Equipment Loan Program and/or James B. Howard, Sr. Memorial Lending Library! Donations such as yours allow us to provide families with many of the items they need for a better quality of life.