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 and educate the community about ALS.
- Create opportunities for advocacy.
- Assist other I AM ALS volunteer teams in community engagement as it relates to their particular initiatives.
Goal:
- Raise awareness of ALS and inspire others to join the movement to end this disease.
Accomplishments:
- Established the Tim Lowrey Panel Series to educate medical practitioners, first responders, and health science students about ALS and its impact on those suffering from the disease and their loved ones. Learn more about these important informational panels and request a panel at the following link: https://www.iamals.org/request-a-panel-of-people-impacted-by-als/
- Developed How to Host an Empathy Dinner to spread awareness and a deeper understanding of ALS
- Developed resources to address the issues of misdiagnosis and delayed diagnosis, such as the CoulditBeALS – Google Docs and
https://drive.google.com/drive/folders/1-QS2iGzwP8-wCXnX40KsQFiizgKp4-uw - Worked closely with both the ALS community and key contacts within Major League Baseball to establish an annual Lou Gehrig Day, a dedicated event aimed at raising awareness about ALS. This collaboration brought together athletes, advocates, and supporters to honor Lou Gehrig’s legacy while spotlighting the ongoing fight against ALS. The event serves as a powerful reminder of the disease’s impact and the need for continued research and support. To learn more, visit the I AM ALS Lou Gehrig Day Team page. Through this partnership, we continue to push for greater visibility and action in the battle against ALS.
- Curated an “Artistry of ALS” art gallery, showcasing the work of individuals living with ALS, and organized an artist panel discussion to accompany the exhibit.
- Developed advocacy initiatives to amplify voices within the ALS community, including supporting team member Lorri Carey in her ongoing production of the powerful podcast I’m Dying to Tell You.
- Provided support and encouragement to women under the age of 35 who were diagnosed with ALS, empowering them to share their personal journeys. This initiative ultimately led to the creation of Her ALS Story, a platform dedicated to amplifying the voices of young women navigating the challenges of ALS.
What we are working on now:
- Increasing the number of Tim Lowrey Panel presentations each year, while also broadening the reach to engage a wider audience. These panels offer a powerful platform for individuals affected by ALS to share their stories and provide valuable insights into the challenges they face. By increasing the number of presentations, we aim to foster greater understanding, spark meaningful conversations, and inspire action within diverse communities. To request a panel, visit this link: https://www.iamals.org/request-a-panel-of-people-impacted-by-als/.
- Supporting and raising awareness for community member projects. We encourage community members to lead passion projects that raise awareness of ALS. By hosting events, community members can directly engage others, share personal stories, and foster a deeper understanding of the challenges faced by those living with ALS.
- Developing innovative social media campaigns to promote existing resources while expanding the reach and influence of the ALS movement. These campaigns are designed to engage a wider audience, raise awareness, and drive meaningful action. By leveraging various platforms, we aim to amplify the voices of those affected by ALS, foster a sense of community, and rally support for research, advocacy, and care initiatives. The goal is not only to increase visibility but also to inspire a larger, more impactful movement dedicated to fighting ALS.
- Creating opportunities for the community to come together to inspire empathy for those living with ALS. The Empathy Dinner gathering is designed to highlight the daily challenges faced by those with ALS and provide a deeper understanding of ALS, spark conversation, and motivate action for ALS research and advocacy.
- Creating engaging, informative, and enjoyable experiences to grow the ALS community, raise awareness, and connect with advocates, people living with ALS, and their caregivers in comfortable and fun environments.
- Promoting public awareness and fundraising efforts within professional and collegiate sports leagues to improve care for those living with ALS, support caregivers, and ultimately end the disease.
If you would like to learn about the other I AM ALS Community Teams, click here: https://www.iamals.org/action/volunteer/