Chapter Highlights

The ALS Association Arizona Chapter is dedicated to serving and empowering people living with ALS and their families. We provide free support, resources, and education to Arizonans impacted by ALS, allowing them to endure their diagnosis with dignity, quality of life, and hope for a world without ALS. Your support directly impacts daily life for people facing this struggle, aids in the search for a cure, and gives the gift of hope to all people affected by ALS.

May 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.

  • May - General Discussion
    Central Arizona General Support group is canceled this month- join us at the Hike for Hope instead! May 10th @ 5:30pm, Judith Tunnel Trail South Mountain, ACCESSIBLE, PAVED walk. We would love to see you there!

Jane Calmes ALS Scholarship Fund

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! 

Learn more about The Jane Calmes ALS Scholarship Fund

Ability Center Drawing

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

Enter to win!

Hike for Hope

Hike for Hope

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, NOT ACCESSBILE

Tuesday, May 10 from 5:30- 7pm - Phoenix, AZ, Judith Tunnell Trail, South Mountain, ACCESSIBLE, PAVED WALK

Saturday, May 14 from 5:30- 7pm - Tucson, AZ, Feliz Paseos Park, ACCESSIBLE, PAVED WALK

Don’t forget to grab your exclusive Hike for Hope t-shirt at

https://www.bonfire.com/hike-for-hope-2022-shirt/
 
CLICK HERE for more information 

Weekend to Remember

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.

 

Register for Weekend to Remember here!

Day on the Lake

Day on the Lake

Register Here!

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:

  • A Phase 2a Study of TPN-101 in Patients with C9ORF72 ALS/FTD, Monday, May 6th at 7:30am
    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
  • Evaluating the Value of Palliative or Hospice Services, Monday, May 23rd at 11am
    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
    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
    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

ALS Advocacy Conference

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.

REGISTER FOR THE ADVOCACY CONFERENCE

SOD1 Mutation ALS Prevention Trial

The HonorHealth Research Institute was chosen as 1 of 30 sites globally to participate in the Biogen “ATLAS” study. This is the first trial EVER designed to prevent patients from getting Amyotrophic Lateral Sclerosis (ALS). 

This study will identify presymptomatic subjects with a Confirmed Superoxide Dismutase 1 Mutation. It is known that these individuals will have a very high risk for developing ALS. Treatment of patients with ALS with Biogen’s drug BIIB067 has been shown to reduce levels of the misfolded SOD1 protein. It is therefore hoped that treatment before the symptoms of ALS begin- presymptomatic individuals- can prevent the development of the disease.

The trial has the ability to perform genetic testing for free in any individual who has a family member affected with ALS and who has a known SOD1 mutation. The trial can also offer genetic testing for free for any individual who has known ALS to see if they have any of the known genetic risk factors for the development of ALS. However, only those individuals with the SOD1 mutation and who have no symptoms of ALS are able to participate in this current trial.

Any interested people should contact Todd Levine, MD the Principal Investigator at Honor Health at 602-258-3354.

Sign the Petition to Ensure Access to AMX0035

The Institute for Clinical and Economic Review (ICER) is reviewing Amylyx Pharmaceutical’s AMX0035 and Mitsubishi Tanabe Pharma America’s (MTPA) oral edaravone. Their review will make a “value assessment” on these new therapies which will impact decisions on cost and access made by private and public insurance such as Medicaid at the state level and Veteran’s Affairs at the federal level. ICER’s value assessment uses methodology which has been called discriminatory by the National Council on Disability, a trusted advisor of the President and Congress.

Please read a blog here that provides more details. In the blog, Daniel Cramer, associate director of public policy initiatives, shares his thoughts on the ICER review through the lens of his family’s experience navigating ALS. Daniel shares what “value” meant to his mother and how value assessments—like the ones ICER uses—do not take patient and caregiver views of value into consideration.

Sign the petition to tell insurers and policymakers to ensure people living with ALS have immediate, full coverage and affordable access to new therapies.

Genetic Testing for ALS

Biogen and Invitae have teamed up to offer a no-charge testing program for ALS. Genetic testing may be helpful for those currently living with ALS, with or without a family history of ALS, as well as people who do not currently have ALS, but have a family member or family history of ALS.

This program covers the cost of genetic testing for ALS by Invitae- there is no charge to you or your family. The test must be ordered by a doctor. To learn more or to pursue genetic testing, please read the information provided through the link below.

Click here for information on genetic testing

ALS Arizona Virtual Tribute Wall

In order to honor and remember those who have been impacted by ALS, we have created the Arizona ALS Tribute Wall. This opportunity is available to all of the ALS community to add their loved ones with ALS, past or present.

There is no cost associated with posting on the wall and it is a public forum. Posting about the individual with ALS is a wonderful way to pay tribute to your loved one. We are looking forward to reading about each person and seeing their photo!

Post on the als Arizona tribute wall 

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