2023 International Symposium on ALS/MND
At the 2023 International Symposium on ALS/MND, I AM ALS community team members submitted and presented four different posters on their incredible work. Please join I AM ALS in celebrating these advocates and reading about their work.
2023 International Symposium on ALS/MND Poster Presentations
Title: ALS Signal, a clinical trials dashboard ensuring that PLWALS and cALS have accurate and up-to date global ALS clinical trials information
Authors: R. Faulstich, D. Faulstich, C. Orsulak and D. Hoey (I AM ALS)
Background: People living with ALS (PLWALS) and their caregivers (cALS) have stated that they are often not presented with clinical trial opportunities even though they may meet eligibility criteria and are willing to travel to recruiting trial sites. To empower PLWALS and cALS to identify appropriate clinical trial opportunities, ALS advocates created ALS Signal: A Clinical Trials Dashboard in 2020 (1). ALS Signal consolidates clinical trial data from multiple sources into an easy-to-use tool that empowers non-professionals to easily find clinical trials that might be of interest, and facilitates more informed discussions with their neurologist. There are two key sections of Signal that are most often used. The first is the “Clinical Research” section that lists all currently active disease modifying interventional ALS trials being conducted worldwide. The second is “Canada & US Trials” which lists every trial site in Canada and the United States currently recruiting PLWALS for trials listed in the Clinical Research section. ALS Signal was developed and is managed by I AM ALS volunteers. It has had over 20,000 unique page views since launch in 2020. The goal is to refresh the dashboard on a bi weekly basis. Because the update process was time consuming, the commitment to have an accurate and up-to-date dashboard every two weeks was challenging.
Objectives: To create a methodology for automating updates of ALS Signal that reduces the time commitment and improves the accuracy of the information presented.
Methods: To automate the update of the Clinical Research section for trials that are listed on clinicaltrials.gov a Microsoft Excel spreadsheet was created to accommodate a full download of ALS trials which is compared to data from the prior update. New trials, along with changes to trial status and location, are automatically flagged. To automate the Canada & US Trials section, a Visual Basic program was added to the Excel spreadsheet to extract individual site information for select trials that are recruiting patients.
Results: Since the introduction of automation, the trials listed on clinicaltrials.gov have been updated and loaded to ALS Signal by a single individual on a bi-weekly schedule. Inconsistencies between the data and ALS Signal were discovered and corrected. PLWALS and cALS can rely on ALS Signal for accurate and up-to-date information.
Discussion: When a new tool like ALS Signal is introduced to the patient community it is important to develop a plan to resource its maintenance to ensure the tool is accurate and up to date.
See the poster here: https://www.iamals.org/wp-content/uploads/2023/12/MND-Poster-FINAL-231109-1.pdf
Title: Writers living with or impacted by ALS and Community-Created Intervention
Authors: Juan Reyes, Mandi Bailey, Katrina Byrd (I AM ALS)
Background: I AM ALS (IAA) is a U. S. community-led nonprofit revolutionizing ALS advocacy. Community members self organize into teams around affinity groups or advocacy interests. Each team seeks to improve the quality of life of those living with and impacted by ALS and find cures and treatments for ALS. The newest team, The Write Stuff, formed as a result of community members’ desire to rewrite the ALS narrative from the perspective of those living with and impacted by ALS.
Methods: Participants agreed to form a team which meets weekly. Meetings vary, but often include guided meditations, collective writing exercises, author talks, workshops, and discussions of future writing projects. Several members have established outlets for publication, but the group also created their own website, The Write Stuff (www.alsthewritestuff.com), and works with participants to place their work.
Results: I AM ALS’ The Write Stuff has grown to 15 members. These members have published 17 posts on their website, which have attracted 395 views. Since the group formed, team members have also been published in ALS News Today and Beneath Your Beautiful. The team has also hosted one literary salon, where team members read their work aloud to an audience of 11.
Discussion: Even when their stories are told, people living with and impacted by ALS are used to having their stories written by people who have not experienced ALS. By taking control of the narrative and writing and publishing their own accounts, people living with and impacted by ALS provide the public with new perspectives and insight into the reality of ALS as a lived experience.
References: Jashelle Caga, Sharpley Hsieh, Patricia Lillo, et al. Front Neuro 2019, 10: 192
Title: Translating the Extended Life Expectancy of US Veterans with ALS
Authors: Mandi Bailey, Jill Brattain, Darla Burge, Katrina Byrd, Shelly Hoover, Kate Peters, Juliet Pierce, and Ashley Lee (I AM ALS)
Background: I AM ALS is a community-led, U.S. non-profit organization that has revolutionized ALS Advocacy. Community members organize themselves into teams, such as the Veterans Team. The Veterans Team meets weekly to identify and address Veteran-specific issues, raise awareness about ALS, and connect Veterans with resources to improve their quality of life through access to care, treatments, and cures. According to Spencer, et al. (2020), a specific cohort of Veterans with ALS has greater longevity than their civilian counterparts. The Veterans Team felt that this information warranted further review.
Objective: The Veterans Team will investigate what the literature suggests about the life expectancy of U.S. Veterans with ALS as compared to that of the civilian population with ALS.
Methods: A literature review is in progress to explore the longer life expectancy of U.S. Veterans with ALS and to identify potential practices that can be translated to the civilian population with ALS.
Results: Spencer, et al. (2020) found that a cohort of Veterans with ALS’s median survival rate nearly doubled the 4.7 years observed in the ALS Registry. Specifically, prolonged survival has been linked with a younger age at diagnosis, extremity onset of initial symptoms, and a longer diagnostic latency after symptom onset. Participants were U.S Veterans with a confirmed diagnosis of ALS (n=179), dichotomized into standard duration (<10 years) and long duration (>10 years).
Discussion: Upon initial review, the need for more in-depth research is evident. The commonalities attributed to increased longevity of Veterans with ALS is unique and could provide valuable insight that has potential application across all demographics.
References: Spencer KR, et al., Neuropathological Profile of Long Duration ALS in Military Veterans. Epub 2020 Aug 4.
Acknowledgements: We would like to thank all Veterans living with ALS for their service.
Title: Let’s Talk About It: A Mental Health Series
Authors: Chanel Hobbs, Juan Reyes, Mandi Bailey, Katrina Byrd, Lisa McMullen (I AM ALS)
Introduction: I AM ALS (IAA) is a U. S. community-led nonprofit revolutionizing ALS advocacy. Community members self-organize into teams around affinity groups or advocacy interests. Each team seeks to improve the quality of life of those living with and impacted by ALS and find cures and treatments for ALS. The Many Shades of ALS Community Team (MSOA) is one of these groups and meets weekly to help address issues specific to people of color living with or impacted by ALS.
Methods: The MSOA team decided to address mental health since it has repeatedly come up in community needs assessments. They created the Let’s Talk About It panel series as a platform from which community members could discuss their mental health as it pertains to ALS-related topics. Panel discussions are formulated and led by people of color living with and impacted by ALS. The creation of each installment is a collaborative and team-driven process. Panel topics are suggested by individual team members and agreed upon by the group. After a topic is chosen, the team workshops thought-provoking questions that expand upon the topic. Staffed with people of color living with or impacted by ALS, panels may also include a mental health professional and/or a social worker from the I AM ALS Community Support Team. Each installment also aims to engage the audience by encouraging questions and comments.
Results: Each installment of Let’s Talk About It focuses on a different ALS topic discussed through a mental health lens. Previous topics include coping with the progressive loss of function and independence, navigating holidays, and discrimination. In 2022, I AM ALS hosted two Let’s Talk About It sessions with 28 total attendees. In 2023, MSOA hosted three with 49 attendees.The team plans to host four panels in 2024.
Discussion: According to Prell et al., strong emotional health is linked to slower ALS progression. Through their Let’s Talk About It series, MSOA aims to foster this crucial healthy emotional well-being while also connecting people to the resources they need. The program provides audiences with a chance to feel seen, understood, and less alone while providing panelists with the therapeutic opportunity to share their story and experiences. The MSOA team is already planning for their 2024 Let’s Talk About It programming and looks forward to continuing to provide a community space honoring mental health. This program is especially critical given that a recent I AM ALS survey showed mental health support as the second highest priority for the ALS community.
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