May 2022 - 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.
Support groups will only be
in-person or virtual as noted. Please join the group that works for you!
If you are unsure which group is best for you, please call the office at 602-297-3800 for assistance.
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General pALS monthly topic:
General discussion
Central Arizona
Persons with ALS- Cancelled. Join us for Hike for Hope instead!
Caregivers- Tuesday, May 17 from 1-3pm
Held at ALS Association Arizona Chapter office
360 E. Coronado Road, Phoenix, AZ 85004
Southern Arizona
Persons with ALS - Cancelled. Join us for Hike for Hope instead!
Caregivers- Wednesday, May 18 from 1-3pm
Page 2: Survivors - Wednesday, May 18 from 6- 7:30pm
Held at Our Saviours Lutheran Church- Activity Building
1200 N. Campbell Avenue, Tucson, AZ 85719
Northern Arizona
Persons with ALS- Monday, May 23 from 1-3pm
Held at Starting Point Church- lounge area
3106 Gateway Boulevard, Prescott, AZ 86303
Virtual Only
Persons with ALS- Wednesday, May 25 from 5:30- 7pm
Caregivers- Wednesday, May 11 from 5:30- 7pm
Page 2: Survivors- Wednesday, May 18 from 5:30- 7pm
Join these meetings from your computer, tablet, or smartphone.
You can also dial in using your phone.
United States: +1 (408) 650-3123
Access Code: 951-959-885
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We're kicking off ALS Awareness Month with our second annual Hike for Hope!
During the first two weeks of May, hike anytime, anywhere to raise support and donations to help defeat ALS. Find more information and register as a participant at www.anython.com/hikeforhope22!
Want to hike with us? We'll be out on the trails in Sedona, Phoenix, and Tucson! The Phoenix and Tucson hikes are accessible, and we encourage all pALS to attend!
Friday, May 6 from 9-11am - Sedona, AZ, Fay Canyon
Tuesday, May 10 from 5:30- 7pm - Phoenix, AZ, Judith Tunnell Trail, South Mountain
Saturday, May 14 from 5:30- 7pm - Tucson, AZ, Feliz Paseos Park
Don’t forget to grab your exclusive Hike for Hope t-shirt at
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Weekend to Remember is a staycation at the Westin Kierland resort in Scottsdale. This event gives families an opportunity to gather and connect with each other. We will eat, play, swim and spend time together making memories. It's the best! As always this program is FREE due to generous grants provided by The Coyotes Foundation and The Charros Foundation.
This year's event is scheduled for Saturday May 21 at 4:00 pm - Sunday May 22 at 12:00pm.
The event is open to families registered with the Youth Program. Space is limited, so if you would like to join us, be sure to register below! Deadline for registration is May 6th.
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Thanks to Ability Center, TWO LUCKY FAMILIES throughout Arizona will receive a free wheelchair accessible vehicle to use for an entire weekend of their choice. A family friendly activity will also be included!
Drawing closes on Friday, June 3rd
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Jane Calmes ALS Scholarship Fund |
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In addition to the physical and emotional toll faced by people impacted by ALS, the financial strain of the disease can devastate a family's ability to plan for future expenses. Families impacted by ALS often do not have the financial means to support the pursuit of college degrees or vocational certificates. Recognizing this unmet need, The Jane Calmes ALS Scholarship Fund was established.
The purpose of the scholarship fund is to provide financial assistance to students pursuing an accredited college degree or vocational certificate, and whose ability to cover the costs is severely compromised as a result of their family's financial burden of ALS.
To read eligibility criteria, apply for the scholarship, or to read more about Jane Calmes, please visit the link below. Applications are due May 18th!
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Held from June 14 through June 22, the National ALS Virtual Advocacy Conference will bring together ALS advocates from across the country to learn the latest updates in ALS research, care services and advocacy, leading up to a day of action.
On June 14, 15, and 16, attendees will participate in live sessions hosted in our virtual platform, leading up to a Contact Congress Day on June 16. Attendees will also have access to virtual exhibit booths to learn more from conference sponsors and exhibitors.
There is no fee to attend, but registration is required. Secure your spot today before we promote the conference publicly!
We hope you can join the nation's largest virtual gathering of ALS advocates! If you have questions about the event or registration, please contact the ALS Association Arizona Chapter office.
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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:
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A Phase 2a Study of TPN-101 in Patients with C9ORF72 ALS/FTD, Monday, May 6th at 7:30am
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The purpose of this webinar is to provide an overview of a new clinical study for people living with ALS and a mutation in the C9orf72 gene. We will describe the scientific rationale for the study, the investigational drug (TPN-101), eligibility criteria, and what study participation involves. This webinar will also share contact information for interested individuals to learn more about study participation. REGISTER HERE
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Evaluating the Value of Palliative or Hospice Services, Monday, May 23rd at 11am
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Laura A. Foster, MD, Associate Professor of Neurology and Medicine at the University of Colorado School of Medicine will discuss the value of incorporating palliative or hospice services into a strategic healthcare plan. REGISTER HERE
- New Seed Grant Program Seeks to Support Exploratory ALS Research
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The ALS Association has launched a new funding opportunity to support exploratory research that has the potential for a significant impact on the fight against ALS. The grants will fund research projects that are gathering preliminary data that can in turn be used to justify larger grants as the research progresses. LEARN MORE HERE
- New ALS Prevalence Numbers
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A paper published Friday presents new estimates for the number of people living with ALS in the United States based on data from the National ALS Registry. The previous estimate from the CDC was at least 16,000 cases. The new data suggests there is somewhere between 17,800–31,843 cases. READ ARTICLE HERE
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In Remembrance
We extend our deepest sympathy and continued support to families and friends of:
Douglas Beuttler, Alice Bishop, Jon Broeder, Tom Dugal, Nila Franklin,
Judith Johnson, Elisabeth Kircher, Juan Lopez, Colleen Ludwig, Phyllis Myers,
Paul Nelson, Alejandro Higadera Perez, Denise Robb, John Westfall, Stefan Willis,
Mark Wilson, and Richard Wojtkun.
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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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