August 2023

If you are caring for someone newly diagnosed with ALS, we encourage you to sign up for our six-week Powerful Tools For Caregivers class August 16 – September 20

This six-week class meets virtually on Wednesdays from 4:00-5:30 p.m.

If you would like to participate in this class, please register by August 9 so we can order the materials for the class and ensure that you receive them before August 16.

REGISTER HERE

Caregiver Support Group

Saturday, August 19
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, August 19

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: August 8| 1:00-2:00 p.m. EST

ALS Support Group: August 8 | 6:00-7:30 p.m. EST

Caregivers Support Group: August 10| 6:30-7:30 p.m. EST

Newly Diagnosed Support Group: August 17 | 1:00-2:00 p.m. EST

Caregivers Support Group: August 22 | 1:00-2:00 p.m. EST

ALS Support Group: September 7 | 6:30-8:00 p.m. EST

Care Services Webinars

ALS Focus Survey: Sharing Experiences with Mobility at Home
Monday, August 28 | 2:00 p.m.

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.

NEALS WEBINARS MORE WEBINAR RESOURCES

August is Advocacy Action Month

During the 2023 ALS Advocacy Action Month, grassroots ALS advocates from across the United States will engage with key members of congress who are decision-makers on federal appropriations for ALS research at the department of defense, national institutes of health, food and drug administration, and centers for disease control. They will share their personal experience with ALS and urge members of congress to increase funding for critical research to find new treatments and a cure.

Learn more about ALS Advocacy Action Month!

We are proud to announce the University of Pittsburgh Medical Center ALS Clinic was designated as a Certified Center of Excellence.

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

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.

GET MORE FROM THE ALS ASSOCIATION

Sign up for ALS Association Email! Get the latest ALS news, be inspired to take action, and learn more about how you can create a world without ALS.

Newsletter Sign Up

Listen to the Connecting ALS Podcast

If you haven’t already, make sure to listen and follow the Connecting ALS podcast! This is a weekly podcast produced by The ALS Association. On the channel, you’ll hear the latest in research & technology developments, highlighted advocacy efforts, and personal stories woven through the ALS community.

Connecting ALS on Facebook