April 2021 - pALS Newsletter |
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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.
You can also dial in using your phone.
United States: +1 (408) 650-3123
Access Code: 951-959-885
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PLEASE NOTE-
To help ensure the health and safety of you and your family, we will only be offering support groups virtually in April. Please join us for any of the following:
Virtual Support Group -
All are welcome!
Tuesday, April 13 from 1-3pm
TOPIC: Emergency preparedness
Caregivers Virtual Support Group -
Caregivers only, please!
Tuesday, April 20 from 5:30- 7:30pm
Page 2: Survivors Support Group -
Survivors only, please!
Wednesday, April 21 from 5:30- 7:30pm
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Join us for our monthly virtual Social Connections program! This month, we will be solving riddles and finding the clues to escape the room on time! No prior experience necessary.
Enjoy a mystery mission and the camaraderie of others from the ALS community!
Event will be on Tuesday, April 27th at 5:30pm.
This event is for current pALS and cALS only, please!
To participate, RSVP is required by Monday, March 19th.
Any questions? Please contact Ma'ayan at maayan@alsaz.org. Hope to see you there!
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Youth Program and Resources |
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ALS is a disease that impacts the entire family, regardless of age. Our youth program is for children ages 6-18 who have a loved one with ALS. Here they can build relationships with other kids and you can make memories as a family. If the children in your life are not registered, click here to get started!
Do the youth in your life have questions about ALS or need support? Check out these ALS resource guides designed specifically youth and young adults. Contact our office to obtain a hard copy of any of these guides.
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ALS Disability Insurance Access Act |
In December of 2020, Congress passed the ALS Disability Insurance Access Act to allow immediate access to SSDI and Medicare for every person living with ALS who applies for SSDI. Just this past week, President Biden signed into law that this Act is retroactive for eligible people regardless of when they applied for SSDI. The 5-month waiting period has been waived moving forward and individuals are now able to access their benefits right away!
The Social Security Administration has been asked to update their website and notify local SSA offices to ensure that SSDI applications are processed promptly and correctly. Should you have any issues with your application, please present your local SSA office with this document. You may also contact the SSA national office at 866-348-7855, or the Patient Advocate Foundation at 844-244-1306 or by clicking here. For additional information on SSDI and Medicare, please click here.
This is a huge win for the ALS community. Thank you to all of our ALS advocates!
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The Jim Click Raffle is back! Enter to win one of three grand prizes in this year's raffle.
With your contribution, you could win a brand new 2021 Ford Bronco Sport, two round-trip first-class airline tickets to anywhere in the world, or $5,000 cash!
- Tickets are 1 for $25 or 5 for $100
- 100% of the proceeds will benefit the ALS Association Arizona Chapter
- Everybody is eligible nationwide and the drawing will be held on December 17, 2021
- Selling raffle tickets to your friends and family is a great way to raise money for your Walk team!
Contact Bekah at 602-297-3800 or bekah@alsaz.org to buy your
tickets or request tickets to sell!
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This year, we are kicking off ALS Awareness Month with a Hike for Hope!
Throughout the first week of May, hike anytime, anywhere, to raise awareness and donations to support Arizona families living with ALS. Visit www.anython.com/hikeforhope for more details and registration information.
We miss seeing all of your faces! Our team will be out on the Box Canyon trail at South Mountain on Friday, May 7th to cheer you on! Stop by at 5:30pm for a fully accessible group hike on a paved trail and an ice cream social. We hope to see you there!
For questions, please call our office at 602-297-3800 or email angie@alsaz.org.
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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:
- Preparing for a Medical Emergency While Living with ALS
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In recognition of Patient Safety Awareness Week, we're providing important resources and tips to help keep you and your loved ones safe in the event of a medical emergency. READ HERE
- Reasons for Hope in ALS Research with the Discovery of NU-9
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In a study funded in part by The ALS Association's TREAT ALS program, researchers from Northwestern University have identified the first compound (NU-9) that eliminates the ongoing degeneration of diseased upper motor neurons, a key contributor to ALS. READ HERE
- Focusing on the Best in Patient Care in Hospital and Clinic Settings
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In this podcast, Leslie Ryan, the Association's director of education and professional development, talks about considerations for patient safety and how families living with ALS can be proactive in hospital environments. Lauren Brown also discusses her role as ALS clinic nurse coordinator. LISTEN HERE
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Communication Options for People with ALS, Monday, April 19th at 11am
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Alisa Brownlee, Assistive Technology Specialist, will share various communication options for people with ALS, including consumer-purchase and insurance-covered technology and devices. REGISTER HERE
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In Remembrance
We extend our deepest sympathy and continued support to families and friends of
Julie Doucette, Joshua Hourscht, Vincent Lam, Susan Masse, Lucille "Johanna" Mobley, Calvin Norman, Herb Sliger, Darlene Snyder, and Judy Sopatyk.
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The ALS Association Arizona Chapter
360 E. Coronado Road, Suite 140 Phoenix, AZ 85004
602-297-3800
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