October 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 October. Please join us for any of the following:
Virtual Support Group -
All are welcome!
Tuesday, October 12 from 1-3pm
TOPIC: Benefits of Palliative Care and Hospice for People Living with ALS
Caregivers Virtual Support Group -
Caregivers only, please!
There is no formal support group this month. Please see information below regarding Caregiver Appreciation Dinner instead!
Page 2: Survivors Support Group -
Survivors only, please!
Wednesday, October 20 from
5:30- 7:30pm
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Caregiver Skills Training in Tucson |
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Caregiver Appreciation Dinner |
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Target ALS Biomarker Study - Please join!
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The purpose of this study is to generate a biorepository of longitudinal blood (plasma and serum), cerebral spinal fluid (CSF), and urine linked to genetics and clinical information that are then made available to the ALS research community for future research. Both ALS participants and healthy control participants will be enrolled over a 5-year period.
ALS participants will complete a total of 5 clinic visits across a 16-month period. Healthy control participants will complete a total of 2 clinic visits across a 12-month period. At-home speech assessments will be collected once weekly for both groups. And, for a subset of participants, at-home vital capacity assessments will also be collected on a biweekly weekly basis for both groups. These samples and clinical information will be de-identified and made available for investigators to use in future research studies.
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Research Study on Quality of Life |
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My name is Aaron Huber, and I am a graduate student in the Speech Language Pathology program working with Dr. Jayanti Ray, faculty research advisor at Southeast Missouri State University. We are conducting a research study about factors predicting ALS patients’ quality of life. I am seeking at least 200 participants to take an online survey. Participants are required to be within 18-75 years old, formally diagnosed with amyotrophic lateral sclerosis for at least one year. In order to participate, you must not be suffering from any other illnesses or diseases, other than ALS, that affect your ability to take this survey. Patient involvement is fully voluntary and solely involves a 15-25-minute online survey. The survey will consist of 29 questions regarding patients’ perceptions of self-efficacy (the belief that you have the ability to adequately manage and cope with the symptoms of ALS), social communication skills with or without the use of AAC, and quality of life. If you choose to participate, no personal identifying information will be requested. Benefits from research provide information about the relationship between self-efficacy, social communication skills, and quality of life. This information can be used for the future treatment of patients.
The study has been approved by the Institutional Review Board of Southeast Missouri State University. If you have any unanswered questions or concerns about your rights as a research participant, contact the Institutional Review Board at irb@semo.edu or call Jennifer Bengtson, IRB chair, at (573) 651-2146.
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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:
- Fight for AMX0035 Approval Moves Forward with Amylyx NDA Announcement
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Jeremy and Jessica talk to the team at Amylyx to discuss their recent announcement that the company intends to submit a New Drug Application for AMX0035 and the path ahead to make sure the drug is available as soon as possible. LISTEN HERE
- Where the Fight to Protect Access to Telehealth Goes Next
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Jeremy and Jessica celebrate Telehealth Awareness Week with Kyle Zebley, Vice President of Public Policy at the American Telemedicine Association, who reminds us: Telehealth is health. LISTEN HERE
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In Remembrance
We extend our deepest sympathy and continued support to families and friends of
Clifford Blanco, David Brown, Gary Eichstadt, Leslie Friedlander, Bruce Glahn,
Keith Howell, Kirsten Hubbard, Rebecca Hursh, Christine Klee, Connie Leung,
Carmelita Martin, Virginia Morthland, Brian Orms, Steve Philippi, Jesus Rivas,
Lynda Rupe, Maria Smith, and Johnny Wright.
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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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