August 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.
- August - Speech and Communication
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:
Every Word Counts: Voice and Message Banking for People With ALS
Alisa Brownlee, ATP, CLIPP, CAPS, WSP discusses the features and benefits of both voice and message banking for people living with ALS.
Monday, August 15th @ 2 pm ET REGISTER HERE
Treating Familial ALS at the Source: The Introduction of Gene Therapies
Scientific researchers continue to uncover new genetic links to ALS, spurring the rise of gene therapies to treat neuromuscular disease READ MORE HERE
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
Purchase tickets at bitenite.org
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.
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!