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Community Outreach Team


When: Wednesdays 1pm – 2pm ET

Co-Chairs: Juliet Taylor (lost her husband to ALS), Tim Abeska (lost his wife to ALS) 

Mission Statement: To engage, educate and empower ourselves and others for the purpose of creating better care, treatments and cures for ALS.

What do we do:

  • Engage, educate and create advocates.
  • Assist other I AM ALS volunteer teams in community engagement as it relates to their particular initiatives.

Goal:

  • Raise awareness of ALS and the movement within the ALS community and the general population. 

Accomplishments: 

  • Created documents, blog posts, and resources to help patients, caregivers, and loved ones impacted by ALS — including but not limited to: 
  • Built local and regional relationships with other ALS organizations
  • Worked across the ALS community and with various contacts in MLB to create an annual Lou Gehrig Day for MLB to raise awareness for ALS
  • Created an Artistry of ALS art gallery featuring people living with ALS and hosted an artists panel to accompany the gallery.
  • Hosted 28 panels in 2023 that educated people outside the existing ALS community about the experiences of those living with and impacted by ALS. 
  • Team member Lorri Carey continues producing her amazing podcast I’m Dying to Tell You 
  • Participated in Wreaths Across America at Arlington Cemetery
  • Supported and encouraged women diagnosed with ALS under the age of 35 to share their stories, which led to the creation of Her ALS Story

What we are working on now: 

  • Doubling the number of panel presentations to 56 in 2024.
  • Creating new social media campaigns that promote existing resources and increase the size and impact of the ALS movement.
  • Brainstorming and executing a project that focuses on misdiagnosis/delayed diagnosis in the ALS diagnostic process and advocates for earlier diagnosis.

If you would like to learn about other I AM ALS Community Teams, click here: https://www.iamals.org/action/join-an-i-am-als-community-team/

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Join us for the 2024 Community Summit!

Join us in Washington DC from May 29th - June 2nd for the 3rd annual ALS Awareness Month flag display and inaugural Community Summit.

Learn more! Continue to the site