May 2023

Communication, Resources & Technology Exhibit

Join us for either one of our free information sessions presented by Tobii Dynavox at 2100 Wharton Street, Suite 400, Pittsburgh, PA 15203.

Tuesday, May 23
10:00 a.m. – 12:00 p.m. or 12:00 p.m. – 2:00 p.m. ET

In both sessions we will hear from experts about the communication, technology & resources available to you.

See demos of new Tobii Dynavox communication devices
Experiment with Tobii Dynavox device software & apps
Chat with Tech Support about Tobii Dynavox devices
Get information from Tobii Dynavox funding & insurance specialists about device financing
Learn about ALS Association grant & loan programs to obtain Tobii Dynavox devices

Preregistration is required to attend. Register now!

For more information contact Care Services Director Jill Kerr. Jill.Kerr@ALS.org | 412-707-3340

Caregiver Support Group

Saturday, May 20 
9:30 a.m. – 10:30 a.m. ET

VIRTUAL & IN-PERSON

Please let us know if you are planning to attend in person at our Pittsburgh office – 416 Lincoln Ave., Millvale.

To register for this support group please contact April Smith. april.smith@als.org.

Living with ALS Support Group

Saturday, May 20
11:00 a.m. – 12:00 p.m. ET

VIRTUAL & IN-PERSON

Please let us know if you are planning to attend in person at our Pittsburgh office – 416 Lincoln Ave., Millvale.

To register for this support group please contact April Smith. 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.

MAINTAINING INTIMACY DURING A JOURNEY WITH ALS

ALS impacts many aspects of life; consider options in maintaining, reclaiming, and reinventing active relationships.

Monday, mAY 22 | 2:00 p.m. ET

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

LEARN MORE: Archived Care Services Webinars

NEALS WEBINARS:

PALLIATIVE CARE FOR PEOPLE WITH ALS

Monday, mAY 22 | 3:00 p.m. ET

Register here

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

In this webinar, we will review what palliative care is and how it can support the quality of life for people living with ALS. We’ll discuss the role of palliative care specialists and advance care planning.

May 2, 2023: Tofersen Approval Update

May 8, 2023: Why lumbar puncture and CSF biomarkers are important to ALS therapeutic development

FDA Approves First ALS Treatment Via Accelerated Approval

LEARN MORE ABOUT TOFERSEN

https://videopress.com/v/Vtx7cP1u?resizeToParent=true&cover=true&preloadContent=metadata&useAverageColor=true

LEARN ABOUT WAYS TO GET INVOLVED IN THE FIGHT AGAINST ALS: www.als.org/awareness

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

GET MORE FROM THE ALS ASSOCIATION

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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.

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