pALS Monthly Newsletter- July 2021

Arizona Chapter

July 2021 - pALS Newsletter

Support Groups

Support groups provide opportunities for group members to share their personal experiences and to learn more about living with ALS. They are designed to share information as well as strategies for preserving the independence and quality of life of both people with ALS and their caregivers, and address the social, emotional, and mental challenges of living with this disease.

Join the meeting from your computer, tablet or smartphone. https://global.gotomeeting.com/join/951959885

You can also dial in using your phone.

United States: +1 (408) 650-3123

Access Code: 951-959-885

PLEASE NOTE-

To help ensure the health and safety of you and your family, we will only be offering support groups virtually in June. Please join us for any of the following:

Virtual Support Group -

All are welcome!

Tuesday, July 13 from 1-3pm

TOPIC: Advance directives, living wills, and 5 Wishes

Caregivers Virtual Support Group -

Caregivers only, please!

Tuesday, July 20 from 5:30- 7:30pm

Page 2: Survivors Support Group -

Survivors only, please!

Wednesday, July 21 from 5:30- 7:30pm

Virtual Murder Mystery

Join Amber and Mallory for our monthly virtual Social Connections program! This month, the group will be doing a virtual murder mystery party.

Come try it out and enjoy the company of others from the ALS community!

Event will be on Tuesday, July 27th at 5:30pm.

To participate, RSVP is required by Tuesday, July 20th.

Please be sure to use a device with a camera as it will be necessary to participate in the activity. All other game supplies will be provided!

Any questions? Please contact Mallory at mallory@alsaz.org. Hope to see you there!

Click here to RSVP for Social Connections!

Advocacy Update

On June 8th, advocates throughout Arizona met with congressional offices to discuss the needs of the local ALS community. The day was spent educating these legislative representatives about how they could help those living with ALS. We asked each office to take action on the following asks:

Support new and increased funding for ALS research in FY2022 Appropriations
Cosponsor the Promising Pathway Act
Support the Accelerating Access to Critical Therapies (ACT) for ALS Act
Sign on to the Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act

There is still time to contact your elected officials and request their help - Become an ALS Advocate today!

Contact Congress Now!

Family Caregiver Reimbursement Program

The Family Caregiver Reimbursement Program through the Arizona Caregiver Coalition assists family caregivers with a partial reimbursement for home modifications and assistive care technology to enable their qualified family member to be mobile, safe, and independent. Family caregivers can be reimbursed 50% for home modifications and assistive care technology up to $1,000.

Funds are limited and applications are reviewed on a first-come, first-served basis. The purchases must occur in the same calendar year (on or after January 1, 2021). For more information on qualifying expenses or to apply, please follow the link below.

Learn more about the Family Caregiver Reimbursement Program

Recruiting Veterans Interested in Helping Others!

Education Corner

There are always chances to learn more about advances in ALS research, ways to increase quality of life, and to hear from experts in the field! Below are some opportunities for you to explore:

Brain-Computer Interfaces for Communication Impairments, July 7th from 10-11am
Dr. Nathan Crone (Johns Hopkins University) discusses the rationale for using brain-computer interfaces to support communication in people with severe motor impairments and describes two clinical trials of implantable brain-computer interfaces at Johns Hopkins . REGISTER HERE

Health Care Disparities and ALS
Dr. Michael Cartwright, co-author of a study on racial differences in ALS interventions, joins Connecting ALS to talk about some of the racial disparities research has uncovered in the ALS journey and the need for more research to understand why. LISTEN HERE

Our Scientific Focus Areas: Disease Mechanisms
ALS is a heterogeneous disease, meaning that there are many diverse ways that disease can occur. It is very likely that more than one disease process is occurring in a person living with ALS. From years of research, scientists have identified various disease processes involved in ALS. READ HERE

In Remembrance

We extend our deepest sympathy and continued support to families and friends of

Susan Greer, Robert Kenyon, David Mangola, Hannelore Manske,

Ellen Mooney, Carol Weitzel, Carol West, and Ed Wolin.

The ALS Association Arizona Chapter

360 E. Coronado Road, Suite 140 Phoenix, AZ 85004

602-297-3800

www.alsaz.org

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