February 2023

Powerful Tools for Caregivers

Tuesdays, February 21 through March 21

6:00 p.m. – 7:30 p.m. ET

Facilitators: Meghan Chrobak, SW and April Smith, CSA II

Virtual: a Zoom link will be provide upon registration.

Registration Deadline Friday, February 17^th.

To register please contact april.smith@als.com

ALS: QUALITY OF LIFE AND MINDFULNESS

Monday, February 13

2:00 p.m. ET

Register here

After registering, you will receive a confirmation email containing information about joining the webinar.

Molly Kilpatrick, MD, a Hospice and Palliative Medicine Specialist shares how incorporating mindfulness into a care plan can support quality of life.

Living with ALS Meeting

Saturday, February 18 
11:00 a.m. – 12:00 p.m. ET

VIRTUAL & IN-PERSON

Please let us know if you would be interested in attending in person at our Pittsburgh office – 416 Lincoln Ave., Millvale.

To register for this support group please contact April Smith, Care Service Associate II. april.smith@als.org.

Caregiver Support Group

Saturday, February 18  
9:30 a.m. – 10:30 a.m. ET

VIRTUAL & IN-PERSON

Please let us know if you would be interested in attending in person at our Pittsburgh office – 416 Lincoln Ave., Millvale.

To register for this support group please contact April Smith, Care Service Associate II. april.smith@als.org.

Resource Group

Topic: Durable Medical Equipment

VIRTUAL ONLY

(Virtual meeting link will be sent after registration)

Thursday, February 23  
3:00 p.m. – 4:00 p.m. ET

To register for this support group please contact April Smith, Care Service Associate II.

RSVP to any Care Services Programs through April Smith at 412-480-5268 or april.smith@als.org

Join the ALS Registry

The National ALS Registry is perhaps the single largest ALS research project ever created and is designed to identify ALS cases from throughout the entire United States.

Most important, the Registry is collecting critical information about the disease that will improve care for people living with ALS and help us learn what causes the disease, how it can be treated and even prevented.

ALS Focus Survey Request

We are measuring the experiences of people with ALS and their caregivers who have sought health insurance coverage of ALS care, services, treatments, equipment, and supplies. Researching these experiences through ALS Focus surveys shows The ALS Association which tools will best support advocacy for stronger coverage of ALS care.

If you know someone with ALS or a current caregiver, please let them know that we want to hear from them at www.alsfocus.org

Local ALS Research Study: Participants Needed

The ALS Association would like to share with you some information about a research study occurring in the Pittsburgh area.

This study is specifically recruiting those with an ALS diagnosis as well as some additional requirements that are listed below. The study is being conducted by Dr. Douglas Weber of Carnegie Melon University and Dr. David Lacomis of UPMC Pittsburgh and involves the implementation of a brain-computer interface electrode.

The goal is to have paralyzed patients control digital devices via their brain motor signals. The link provided shares some additional information regarding this technology:

Learn More

Additional requirements for participation include:

Age 21-75
Severe weakness in all 4 limbs (including no ability to use arms/legs)
Breathing function at 50% or more or on mechanical ventilation
Ability to undergo an MRI
Ability to undergo the procedure
Distance within about 1.5 hours of the Pittsburgh area

Should you feel that you meet the requirements for this study and are interested in learning more information, please contact Jill Kerr, jill.kerr@als.org

An informational session will be conducted with researchers and prospective participants at a later date.