September 2023

TAKE THE SURVEY

In 2020, we learned that mobility and being able to do activities matter most to people living with ALS. Now we want to know more so we can more effectively address the needs of our community.

More information about ALS Focus and instructions for participating in the Mobility at Home Survey can be found at www.ALSFocus.org.

Caregiver Support Group

Saturday, September 16
9:30 a.m. – 10:30 a.m.

VIRTUAL & IN-PERSON

Register here! After registering, you will receive a confirmation email containing the virtual meeting link.

If you would like to attend in person at our Pittsburgh office (416 Lincoln Ave. in Millvale) please contact April Smith at april.smith@als.org.

Living with ALS Support Group

Saturday, September 16

11:00 a.m. – 12:00 p.m.

VIRTUAL & IN-PERSON

Register here! After registering, you will receive a confirmation email containing the virtual meeting link.

If you would like to attend in person at our Pittsburgh office (416 Lincoln Ave. in Millvale) please contact April Smith at april.smith@als.org.

Life After ALS Support Group

VIRTUAL & IN-PERSON

If you are interested in joining our Life After ALS Support Group please contact Jill Kerr at jill.kerr@als.org.

We want to make care services programs and resources accessible to everyone impacted by ALS no matter where they live. If you are unable to make it to your local ALS support group, we offer other opportunities for you to connect with our ALS community virtually every month.

More Options for Virtual Support Groups:

Click the support group you would like to join below to register. After you register, you will receive an email confirmation with the virtual meeting link.

Living with ALS Support Group: September 12| 1:00-2:00 p.m. EST

ALS Support Group: September 12 | 6:00-7:30 p.m. EST

Caregivers Support Group: September 14| 6:30-7:30 p.m. EST

Newly Diagnosed Support Group: September 21| 1:00-2:00 p.m. EST

Caregivers Support Group: September 26 | 1:00-2:00 p.m. EST

ALS Support Group: October 5 | 6:30-8:00 p.m. EST

ALS Veterans & Caregivers Virtual Resource Group

Community Care & Caregiver Support
Thursday, September 28 | 2:00 – 3:00 PM

Advanced Directives & Goals of Care
Thursday, November 16 | 3:00 – 4:00 PM

Both virtual sessions are open to ALS veterans and their caregivers.

REGISTER HERE

Care Services Webinars

Monday, September 18 | 2:00 p.m. ET

ADDRESSING RESPIRATORY CHALLENGES IN ALS

Learn how to decrease your work of breathing in September’s Living with ALS webinar with

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

LEARN MORE: Archived Care Services Webinars

Webinar Feedback Survey

We value your feedback! Please answer a few questions about your experience with our webinars here.

MORE WEBINAR RESOURCES

Start YOUR journey today: myalsjourney.org

My ALS Journey™ is a new interactive tool designed to help guide you to necessary resources, advice, and support, if and when you need them. By sharing your specific symptoms as you go, you will be able to stay informed of the latest treatment options and prepare for conversations with your care team.

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

*Don’t forget to take the survey at the top of the page!

Local ALS Research Study Participation

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

For information about current or upcoming studies contact Jill Kerr. jill.kerr@als.org

Sign Up for Care Matters

With an ALS diagnosis, there are decisions to make, symptoms to manage, treatment options to evaluate, and adjustments to almost every detail of your daily routine.

Stay up-to-date by subscribing to our quarterly e-newsletter, Care Matters. You’ll receive the latest information about ALS care, disease management and resources to help you navigate your ALS journey.

Together, we will reach our goal of making ALS a livable disease. Sign up TODAY!

View previous issues of Care Matters HERE.

Sign Up for Research Matters

Our global research collaborations continue to make great strides in the fight against ALS. Stay up-to-date by subscribing to our monthly e-newsletter, Research Matters, delivered to your inbox the last Thursday of each month. You’ll receive information about the latest ALS research discoveries, key advances in technology and new treatment approaches taking place in clinical trials.

Together, we will create a world without ALS. Sign up TODAY!

View previous issues of Research Matters HERE.