NEW! Life After ALS Support Group
We are excited to announce the start of a new support group this month. Life After ALS has been created to allow those who have lost a loved one to ALS, an opportunity to support others who have experienced this loss.
FIRST MEETING: January 28, 2023 12:00pm
RSVP to April Smith at april.smith@als.org
This meeting will be offered in person at our office in Millvale as well as virtually.
FEATURES AND BENEFITS OF ALS MULTIDISCIPLINARY CARE
Monday, January 30, 2023, 2:00 p.m. ET
After registering, you will receive a confirmation email containing information about joining the webinar.
Lauren Tabor Gray, Ph.D., assistant professor and co-director of the ALS Clinic at NSU Healthscience Institute will share the features and practical benefits of ALS multidisciplinary clinical care.
WHAT DO I NEED TO KNOW ABOUT CLINICAL TRIALS?
January 25 @7:00 AM (EST)
Learn about the importance of clinical trials, how to find a suitable clinical trial, and what to consider if you want to take part and next steps. Moderated by Rachael Marsden. Panelists include Allison Bulat, Nadia Sethi & Paula Trefiak.
ALSUntangled – Vitamins and Supplements in ALS
January 18, 2023 / 12:00 pm-1:00 pm
In this webinar, Dr. Bedlack will review ALSUntangled, including how patients and families can use it to make more informed decisions about vitamins and supplements. He will show how he guides patients at Duke who want to self-experiment with these products and share his current most and least favorite ones.
The ALSpire Study: clinical trial for broad ALS
January 12, 2023 / 2:00 pm-3:00 pm
Dr. John Ravits will provide an overview of the ALSpire Study with an explanation of the study rationale, why potential therapy is relevant to people with broad ALS (both non-genetic and genetic forms of disease), eligibility criteria, and what study participation involves. This webinar will also share resources for interested individuals to learn more about study participation.
Living with ALS Meeting
January 21, 2022
11:00 a.m. – 12:00 p.m. ET
VIRTUAL ONLY
Please let us know if you would be interested in attending in person at our Pittsburgh office.
Caregiver Support Group
January 21, 2023
9:30 a.m. – 10:30 a.m. ET
VIRTUAL ONLY
Please let us know if you would be interested in attending in person at our Pittsburgh office.
Resource Group
Topic: Durable Medical Equipment
January 18, 2023
2:00 p.m. – 3:00 p.m. ET
This group will present several common equipment items and demonstrate how these items can be used.
RSVP to any Care Services Programs through April Smith at 412-480-5268 or april@cure4als.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:
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.
Welcome to the Team!
Amber Letters recently joined the Western PA team as Development Manager focusing on corporate partnerships, sponsorships, and the CEO Soak. Amber brings years of experience in education and a deep passion for our mission after losing her dad, Bob Letters, to ALS in 2021. Do you know of a company that would like to support the ALS Association or an executive that would like to get soaked in the PPG Fountain?
Contact Amber at amber.letters@als.org or 412-866-5798.
Contact Us:
Jill Kerr, MSW
Phone: 412-707-3340
Email: jill.kerr@als.org
Kristin Keefe, MSW, LSW
Phone: 412-632-4297
Email: kristin.keefe@als.org
Brittany McCall, MSW, LSW
Phone: 412-651-2313
Email: brittany.mccall@als.org
Kate Karlovits, SLP
Phone: 412-295-1221
Email: kate.karlovits@als.org
April Smith
Phone: 412-480-5268
Email: april.smith@als.org
Our former Director of Care Services, Marie Folino, MSW, LSW, has moved into the role of Managing Director of Care Services, overseeing all care management for our region. Rest assured, Marie will remain an integral part of our local work and you will be in good hands with the familiar faces filling her shoes.
Chapter Services
Our Chapter offers a full range of services to guide and assist you as you learn more about ALS.
The ALS Association - Western Pennsylvania Blog 