2021 International Symposium on ALS/MND
At the 2021 International Symposium on ALS/MND, four different poster submissions were accepted. Each topic is an initiative that came out of the incredible work done by those most impacted by ALS who are members of I AM ALS Community Teams.
2021 International Symposium on ALS/MND Poster Presentations
Title: The Morris ALS Principles: A Multi-Stakeholder Framework for Patient-Driven Research
Date and Time: Thursday, Dec 9, 2021 11:50 – 1:20 p.m. ET
Abstract: One of the goals of I AM ALS is to remove barriers to therapies and improve ALS care and research from a multi-stakeholder perspective. Despite their expertise and contributions, people living with and impacted by ALS are still being blocked from attending scientific forums sponsored by organizations that are supposed to be serving the community. As such, ALS advocates turned to the HIV community to learn from how they demanded – and received – seats at the decision-making tables. Inspired by the Denver Principles, a landmark document drafted by HIV/AIDS activists in 1983, ALS advocates sought to create the first guidance document to outline people living with ALS’ expectations regarding their inclusion in matters directly affecting them. The Morris Principles serve as a social contract that solidifies the necessary involvement of people living with ALS.
Poster: The Morris ALS Principles
Video: https://www.youtube.com/watch?v=tTBOOgqaGK0
Title: Veterans with ALS and Suicidal Ideation: A Community Created Intervention
Date and Time: Tuesday, Dec 7, 2021 11:50 PM – 1:20 p.m. ET
Abstract: An ALS diagnosis presents many physical, social and psychological challenges. A recent piece, “Suicide among veterans with amyotrophic lateral sclerosis” (“Suicide”), highlights that an ALS diagnosis leads to an increased risk of mental health illness, including depression, suicidal ideation and death by suicide. This is particularly true for veterans who are at a higher risk for suicidal ideation and death by suicide. (Lund) I AM ALS is a community-led US non-profit that revolutionizes ALS Advocacy. Community members self-organize themselves into community teams, such as the Veterans Team. This team meets once a week to raise awareness for veteran-specific ALS issues and connect veterans with resources to improve their quality of ALS care. Upon reading “Suicide,” the Veterans Community Team decided to create a program that would raise awareness around mental health issues and resouces for veterans with ALS and decrease the occurrence of suicidual ideation and death by suicide.
References: 1. Lund EM, Hostetter TA, Forster JE, et al. Suicide among veterans with amyotrophic lateral sclerosis. Muscle & Nerve. 2021:1-5 Acknowledgements We would like to thank the ALS patients and caregivers that were so open and willing to discuss this important issue.
Poster: Veterans with ALS and Suicidal Ideation
Video: https://www.youtube.com/watch?v=FX0FJjMr1U0
Title: An Assessment of the ALSFRS-R by the ALS Community: A Mixed-Methods Study
Date and Time: Tuesday, Dec 7, 2021 11:50 – 1:20 p.m. ET
Abstract: Background The Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) is the most commonly used outcome measure in ALS clinical trials. The objective of this study is to identify potential limitations in the ALSFRS-R from a patient and caregiver perspective. An online survey was conducted via SurveyMonkey from June 15, 2021 to July 2, 2021. Study enrollment was open to all patients diagnosed with ALS or caregivers of people who currently have or who passed away from ALS. A qualitative content analysis was conducted to capture overarching themes. A total of 103 people responded to the survey, of whom 67% are people with ALS and 33% are caregivers. Forty-seven (46%) individuals expressed concerns about their ability to accurately answer at least one item of the scale. Most individuals had concerns about item 1 (speech), item 8 (walking), and item 5 (cutting food). The majority of comments fell into one of the following categories: language used in the question is of a literacy level too high for most people with ALS; language used is of appropriate literacy level but needs clarity; the question is answered differently depending on the situation or equipment used; it is difficult to distinguish the difference between choices on the scale; and the structure and/or underlying assumptions of the question makes it difficult to answer. Discussion In this study, we found that nearly half of the patients indicated concerns that parts of the ALSFRS-R do not accurately reflect their ability. Though improving language may address some of these concerns, there is need to critically revise items to accurately capture the patient’s functioning.
Poster: An Assessment of the ALSFRS-R
Video: https://www.youtube.com/watch?v=p0oTTZlg3dA
Title: Genetic ALS Observational Studies Dashboard Presentation
Date and Time: Tuesday, Dec 7, 2021 11:50 PM – 1:20 p.m. ET
Abstract: Through frequent meetings with the scientific research community, the Familial ALS Community Team (fALST) – part of the patient-led organization I AM ALS – discovered that asymptomatic ALS research studies often have difficulty connecting with prospective study participants, significantly prolonging a study’s time to completion. Pre-symptomatic gene carriers are hard to reach since they typically do not begin interacting with the ALS medical community until the onset of ALS symptoms. The ALS patient community was concerned that partially filled or slow-to-fill research studies may delay scientific progress and lead to reduced investment in future ALS research due to lack of adequate data points, both of which could be an impediment to finding a cure. Per industry research, the challenge of securing participants primarily stems from identifying an at-risk population and resolving various logistical and ethical considerations].
The fALST interviewed numerous principal investigators, as well as both active and former pre-symptomatic study participants, to identify ways to better match supply and demand with the intent of accelerating the time to conclude pre-symptomatic studies. The result was the creation of the newest addition to ALS Signal, a browsable online dashboard that contains pre-symptomatic research studies and the ability to filter each based on key attributes.
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