ALS Ice Bucket Challenge Progress

 

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 to answer any questions you may have.

 

315-413-0121
info@alsaupstateny.org

 

To Register

 

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

 

Rabecca Coulter
Care Services Manager
Counties: Broome, Chenago, Cortland, Jefferson, Lewis, Madison, Oneida, Onondaga, Oswego, St. Lawrence, Tioga, Tompkins
315-413-0121 or 315-730-4601 | rcoulter@alsaupstateny.org

 

Julie Garland
Regional Care Services Coordinator (Western New York)
Counties: Allegany, Cattaraugus, Chautauqua, Erie, Genesee, Niagara, Orleans, Wyoming
716-860-1947 | jgarland@alsaupstateny.org

 

Laura Pelow
Regional Care Services Coordinator (Finger Lakes)
Counties: Cayuga, Chemung, Livingston, Monroe, Ontario, Schuyler, Seneca, Steuben, Yates
585-727-9153 | lpelow@alsaupstateny.org

 

Marlene McCleary
Regional Care Services Coordinator (Eastern New York)
Counties: Albany, Clinton, Columbia, Delaware, Essex, Franklin, Fulton, Greene, Hamilton, Herkimer, Montgomery, Otsego, Rensseler, Saratoga, Schenectady, Schoharie, Warren, Washington
518-860-6277 | mmccleary@alsaupstateny.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 person 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.

 

Home Visits

 

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.

 

Peer Support Groups

 

The purpose of our monthly ALS Education and Awareness Group meetings is to offer 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 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.  Prior to the COVID-19 pandemic, we were offering monthly face-to-face groups in Buffalo, Rochester, and Syracuse. We are currently offering all regional monthly support groups virtually.  That includes Western New York, Eastern & Northern New York, Central New York, and Finger Lakes as well as an all-area group for caregivers only. 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, 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.

 

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. 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

 

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 to more efficiently support families living with ALS. 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) or email (info@alsaupstateny.org) our office and you will be directed to a care services staff person.

 

ALS Peer Support Meetings

Update (April 2020): Due to the COVID-19 pandemic, all monthly support groups are being held VIRTUALLY until further notice through the platform RingCentral Meetings. RingCentral Meetings can be called into by phone or joined from PC, Mac, Linux, or Android 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 at 315-413-0121 or info@alsaupstateny.org for the group specific call-in and/or log-in information.

 

1st Tuesday - Western New York / Buffalo from 6:30 pm to 8:00 pm

 

2nd Tuesday - Eastern & Northern New York from 6:30 pm to 8:00 pm

 

2nd Thursday - All Area Caregiver Support Group from 6:30 pm to 8:00 pm

 

3rd Thursday - Central New York / Syracuse from 6:30 pm to 8:00 pm

 

Last Tuesday - Finger Lakes / Rochester 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
Fax: 315-464-7328
Center Directors: Eufrosina Young, MD and Jenny Meyer, 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
Phone: 585-275-2559

 

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
Phone: 716-250-2000
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
Phone: 518-525-1629
Medical Director: Roberta Miller, MD

 

 

 


 

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, 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) 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.