Upstate New York Chapter Care Services
The ALS Association Upstate New York Chapter 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 (8:30 am 5:00 pm) to answer any questions you may have.
315-413-0121 or 866-499-7257 (toll free)
To register with the ALS Association Upstate New York (UNY) Chapter, you MUST complete and submit the following three (3) 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.
UNY Chapter Registration Form
Release of Information
Verification of Diagnosis
Upstate New York Chapter Care Services Staff
Care Services Manager
Central, Eastern, and Northern New York
315-413-0121 or 315-730-4601 | firstname.lastname@example.org
Regional Care Services Coordinator (Western New York)
Counties: Allegany, Cattaraugus, Chautauqua, Erie, Genesee, Niagara, Orleans, Wyoming
716-860-1974 | email@example.com
Regional Care Services Coordinator (Finger Lakes)
Counties: Cayuga, Chemung, Livingston, Monroe, Ontario, Schuyler, Seneca, Steuben, Yates
585-727-9153 | firstname.lastname@example.org
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 member as identified above.
Information and Referral Services
We work with individuals and families to help them connect to and navigate through Chapter programs and vital community resources and services throughout New York State.
This program is designed as an opportunity to establish a relationship between the Chapter 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.
Education and Awareness (Support) Groups
The purpose of our monthly ALS Education and Awareness Group
meetings is to offer education and support. The 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 challenge of 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 have active monthly face-to-face groups in Buffalo, Rochester, and
Syracuse. We also offer several call-in groups each month. Please
scroll down the page for additional group information.
James B. Howard, Sr. Memorial Library
We have books and DVDs for loan at the Chapter 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 built-up handle utensils and gait belts, all the way up to large or complex items, such as power wheelchairs and speech generating devices. Notably, our inventory is always changing. We currently have loan closets in Buffalo, Rochester, Rome, and Syracuse. We encourage you to contact your regional care services staff member to see if the item you're looking for is available for loan prior to making any out-of-pocket purchases.
ALS 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 our Chapter and submit an application. 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.
Asistance Program Information and Application
Caregiver Respite Program
This is 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 our Chapter and submit an application. Grant amount is $1,000. 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.
Caregiver Respite Program Information and Application
Care Connection Program
The ALS Association Care Connection provides the tools and information needed to organize a network of volunteers from the community - friends, neighbors, members of community organizatios like your church, or other servce groups - to provide help for the person with ALS and his or her family, and often give the caregiver a break from their day-to-day responsibilities. While the Chapter does not organize and run the Care Connection, your Chapter Care Services staff is available to answer ongoing questions and to help with problem-solving. Helping the family to utilize the Chapter's resources as well as community resources will be an important task for the Care Connection. Learn more about the Care Connection here.
To learn more about the care services and programs available through our Chapter you may call (315-413-0121/866-499-7257) or email (email@example.com) our office and you will be directed to a care services staff member.
ALS Education and Awareness Group Meetings
In Buffalo on the 1st Tuesday each month
All meetings are at 6:30 PM at the Dent Neurologic Institute (3980 Sheridan Drive, Amherst)
In Rochester on the last Tuesday each month
All meetings are at 6:30 PM at the Pieters Family Life Center (1025 Commons Way, Rochester)
In Syracuse on the 3rd Thursday each month
All meetings are at 6:30 PM at the Hospice of CNY (990 7th North Street, Liverpool)
These two groups are available for interested individuals throughout our service area to call into by phone. You simply dial the number and enter the code on the scheduled day and at the scheduled time to be added to the call.
General Discussion Group (open to everyone)
The 2nd Tuesday of each month at 12 pm AND 7 pm
Caregiver Discussion Group (open to caregivers only)
The 2nd Thursday of each month at 12 pm AND 7 pm
Local ALS Clinics and Centers
Syracuse, New York
ALS Research and Treatment Center
SUNY Upstate Medical University
Department of Neurology
750 East Adams Street
Syracuse, NY 13210
Phone: 315-464-2469 (ask for the scheduling coordinator, Jennifer Eaton)
Center Director: Eufrosina Young, MD
Note: This ALS Association Certified Treatment Center of Excellence is the only clinical
trial site in New York State outside of New York City. Additionally, the
Chapter’s Care Services Manager participates in this weekly
clinic serving as a patient liaison and advocate.
Rochester, New York
ALS Clinic/Neurology Outpatient Clinic
Strong Memorial Hospital
1st Floor, AC-1
601 Elmwood Avenue, Box 673
Rochester, NY 14624
Note: Our care services coordinator for the Finger Lakes region participates in this monthly clinic.
Buffalo, New York
Neuromuscular Disorders Center
DENT Neurologic Institute
3980 Sheridan Drive
Amherst, NY 14226
Center Director: Thomas H. Holmlund, MD
Note: Our Care services coordinator for the Western New York region participates in this monthly clinic.
Albany, New York
ALS Regional Center
St. Peter’s Hospital
19 Warehouse Row
Albany, NY 12205
Medical Director: Roberta Miller, MD
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, rolling shower chairs, power wheelchairs, alternating pressure cushions or alternating pressure mattresses, speech generating devices, etc.
Note: We are unable to accept power scooters to the Robert Wright Memorial Equipment Loan Program. There are differences between a power scooter and a power wheelchair. A power wheelchair usually offers more features and support to help you, including motorized stand, tilt, and recline options whereas a power scooter is not meant to be a long-term positioning and mobility solution.
You must speak with one of the Upstate New York Chapter’s care services staff members first (315.413.0121 or toll free at 866.499.7257) to ensure we are able to take the item(s) you’d like to donate. Once confirmed by the office, we can make the necessary arrangements for the pickup of larger items. Smaller items (e.g. built up utensils, scoop plates, long handle mugs, voice amplification devices, etc.) may be mailed to or dropped off at our office at the address below:
The ALS Association Upstate New York Chapter
Attn: Care Services
135 Old Cove Road, Suite 213
Liverpool, NY 13090
Note: It is preferable that speech generating devices be hand-delivered to our office or one of our care services staff to further ensure protection from damage.
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 Lending Library.
Thank you for considering a donation to the Robert Wright Memorial Equipment Loan Program and/or James B. Howard, Sr. Memorial Lending Library! The items you donate will be available for use by other families free-of-charge. Donations such as yours allow us to provide families with many of the items they need for a better quality of life.