July 2022 - pALS Newsletter
Support Groups
Welcome our new Care Services Coordinator, Kaleigh!
Please welcome Kaleigh Bryan to the ALS Association Arizona Chapter Care Services team!

Kaleigh recently moved to Arizona from North Carolina after completing her Bachelor's Degree in Public Health. She will be the new Care Services Coordinator serving pALS at the HonorHealth and Mayo ALS Clinics and looks forward to meeting each of you!

We are very excited to have Kaleigh on our team!
Restorative Outing in Phoenix
The Musical Instrument Museum is kindly hosting The ALS Association Arizona Chapter on Tuesday, July 12th, 2022 for a fully accessible, guided tour for our pALS and cALS!

Meet us at 1PM in the MIM Lobby where we will be guided through the museum as we’ll learn about the galleries, exhibits, musical cultures, and fascinating instruments on view that highlight the importance of music as global communication.

Event is occurring in place of our July in-person Phoenix pALS Support Group.
ALS Clinical Research Learning Institute
NEALS is seeking self-nominations for the 2022 ALS Clinical Research Learning Institute (CRLI). The ALS-CRLI is a two-day program that empowers attendees to be strong advocates in the field of ALS by educating them on clinical research and the therapy development process. Certification as an ALS Research Ambassador provides opportunities to influence and improve the ALS research process.

The 2022 NEALS CRLI will take place November 3 - 4, 2022 in Clearwater Beach, Florida. 

NEALS will cover the cost of travel and a one-night hotel stay for selected participants. 
Application Deadline: July 25, 2022

If you have questions about the event or registration, please contact Carly Allen at callen@neals.org or 913-370-6321.
Register Now for the Walk to Defeat ALS!
The Walk to Defeat ALS is the #1 way to unite and fundraise for those living with ALS. Each year, fundraising through the Walk drives bold and urgent innovation as we march together toward a cure for ALS.

Participation in the walk is free and everybody is invited to join!

If you register your walk team by July 1st, you will receive this unique t-shirt!

Restorative Outing in Tucson!
Save The Date - Phoenix Bite Nite!
The Arizona ALS Association is hosting the 13th annual Bite Nite, a signature culinary-based fundraising event, at The Westin Kierland Resort & Spa in Scottsdale, AZ. This event raises funds and awareness for ALS while showcasing unique dishes from top chefs across the Valley.

Saturday, October 8, 2022
Westin Kierland Resort & Spa

Details on how to purchase your tickets will be coming soon!
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:
  • An Update on AMX0035...
  • This week, Jeremy provides an update on the fight for approval of AMX0035, including an extended review period at the FDA and how new data and approval in Canada puts more pressure on the FDA to act quickly. He also talks to Dr. David Vequist, director of the Center for Medical Tourism Research at the University of the Incarnate Word, about the history of medical and pharmaceutical tourism around the world. LISTEN HERE
  • Biogen Announces Promising Findings in Tofersen Trial
  • Biogen has released new data suggesting that early administration of tofersen showed that the drug was effective in slowing down progression of ALS in people with SOD1 mutations.  READ MORE HERE
In Remembrance
We extend our deepest sympathy and continued support to families and friends of:
Deborah Arnold, Thomas Baer, Mary Dilts, Jesse Frankowiak,
Kathleen Leverenz, Kenneth Zubrod
The ALS Association Arizona Chapter
360 E. Coronado Road, Suite 140 Phoenix, AZ 85004