Patient & Family Services

Our Chapter offers a full range of services to guide and assist you as you learn more about ALS. Here you will find pertinent information for patients, caregivers, family members, friends and healthcare workers. 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. 

• ALS Certified Center of Excellence ALS Research and Treatment Center at University Hospital, in Syracuse, directed by Dr. Jeremy Shefner. Appointments can be made by either physicians or patients.
  Phone (315) 464-4243 or Fax (315) 464-7328
• Respite Care Program to provide family caregivers time away from the home and their responsibilities. Caregivers can use the time - from a few hours to a full day or more - to take care of personal matters, catch up with family and friends, and have a chance for rest and relaxation.
• The Robert Wright Memorial Durable Medical Equipment Loan Closet
• Insurance and Medicare Help
• Caregiving Tips and Techniques
• The James Howard Sr. ALS Loan Library
• Living With ALS Manuals© - now available online for viewing, downloadins and printing with Adobe Acrobat

• Online resource tool offered by the Medicare Rights Center (MRC) helps provide health care information and assistance for people with Medicare.

• ALS Support Group Meetings:
  
  In Buffalo on the Third Monday each month
  All meetings are at 6:30 PM at the Dent Neurologic Institute. 

In Rochester on the Last Tuesday each month                            
All meetings are at 7 PM at the Al Sigl Center. 

In Syracuse on the Last Thursday each month
All meetings are at 7 PM at the Center of Hope. 

In Binghamton the first Saturday each month
All meetings are at 1:00 PM at the Broome County Library

IT IS sharing helpful hints in dealing with doctors, employers, friends, and relatives as well as practical advice on day-to-day living with ALS. 

IT IS facilitators and participants who have genuine concern for others. 

IT IS a safe place to express oneself in confidentiality. 

IT IS a married couple who just found out "they" have ALS and want to know more about the disease in clearer terms. 

IT IS individuals who share experiences as participants in clinical trials. 

IT IS sometimes about the tremendous amount of stress put on relationships and families. 

IT IS a place where you can reach out and help others by sharing your experience. 

IT IS you, me, and others who gather together and become concerned about what is happening in our lives. A sharing of people who really know what it is to live with ALS. 

IT IS about hope. 

IT IS NOT group therapy. There is no psychological jargon or probing into one's personal life. You don't have to talk if you don't want to. 

IT IS NOT a cure for ALS or some magical experience that enables you or your loved ones to breeze through the devastation of ALS.