Her ALS Story is a group of young women, all diagnosed with ALS before the age of 35, who work to spread awareness that the disease can affect anyone at any age. The ALS Therapy Development Institute (ALS TDI) is a nonprofit biotech company and the world’s most comprehensive drug discovery lab focused solely on ALS. The two organizations’ missions may seem different—but they are intimately related.
Behind every breakthrough in ALS research are the personal stories of the people affected by the disease. To shine a light on these connections, ALS TDI and Her ALS Story are presenting "Your Story. Our Science," a 3-part Town Hall series connecting the realities of the ALS community with cutting-edge scientific research.
At each town hall, you'll hear powerful personal experiences of living with ALS from members of Her ALS Story. Following this, ALS TDI scientists will discuss our research and its connection to their experiences. These events will highlight how community insights are vital in driving meaningful scientific progress in ALS research
"Her ALS Story is thrilled to collaborate with ALS TDI on this Town Hall series," says Leah Stavenhagen, Founder and President of Her ALS Story."As people living with ALS, we often feel removed from the science and research that has the potential to alter the trajectory of our disease. This series represents a unique opportunity for young women living with ALS and ALS researchers to learn from each other. I’m excited to hear these powerful conversations!"
To learn more and sign up to attend the “Your Story. Our Science.” Town Hall Series, visit https://www.als.net/als-town-hall/
Part 1: Why Me? Identifying ALS Causes
May 6th at 3 p.m. ET
Join ALS TDI and Her ALS Story (HAS) for the first of a 3-part collaborative Town Hall series, "Your Story. Our Science."
This session will begin our series by examining the personal narratives of HAS members, offering crucial real-world insights into potential etiological factors. Building upon these invaluable perspectives, ALS TDI researchers will provide an expert overview of the current scientific understanding of ALS causation, differentiating between established, highly suspected, and emerging causes and risk factors.
Furthermore, ALS TDI researchers will elucidate the direct impact of community-shared experiences on shaping ongoing scientific research efforts aimed at unraveling the potential causes of ALS.
Part 2: What are Lesser-Known ALS Symptoms?
June 10th at 3 p.m. ET
Join ALS TDI and Her ALS Story (HAS) for the second of a 3-part collaborative Town Hall series, "Your Story. Our Science."
This session will scientifically investigate the often-overlooked and less documented aspects of the ALS disease phenotype. Gain critical insights from the personal accounts of HAS members as they share their experiences with a broader spectrum of ALS symptoms.
ALS TDI researchers will then discuss the scientific methodologies employed in the ARC Study to systematically track both well-established and less common symptoms. They will emphasize the paramount importance of community-derived data in identifying previously underrecognized symptoms, potentially expanding our scientific understanding of the disease and informing the development of more comprehensive therapeutic strategies.
Part 3: How Can We Improve ALS Diagnosis?
July 10th at 3 p.m. ET
Join ALS TDI and Her ALS Story (HAS) for the third and final installment of our 3-part collaborative Town Hall series, "Your Story. Our Science."
This final installment will scientifically examine the challenges inherent in the current ALS diagnostic pathway and explore ongoing efforts to enhance its efficiency and accuracy. Hear firsthand accounts from HAS members detailing their personal diagnostic journeys, including the initial presentation of symptoms and the timeline to confirmation.
Providing crucial scientific context, a neurologist will outline the current diagnostic protocols and their inherent limitations. Subsequently, researchers from ALS TDI will detail ongoing scientific initiatives and research endeavors specifically focused on developing and implementing improved diagnostic tools and strategies, ultimately striving for earlier and more precise diagnoses for individuals and families affected by ALS.
For more information about how to sign up to attend the “Your Story. Our Science.” ALS Town Hall Series, click here.
We look forward to launching the first event of this series in May as part of ALS Awareness Month! We hope you can join us and be a part of this important discussion.