From June 6th to 7th, Emma Allen, a Patient Navigator for ALL ALS, attended the End the Legacy Summit in Philadelphia. End the Legacy is an organization dedicated to serving the needs of people who are at risk of developing ALS and/or Frontotemporal Dementia (FTD). They aim to educate the general and at-risk population, increase the visibility of the at-risk community in the medical field, provide essential community support, and lead and support a multitude of advocacy efforts.
During the Summit, Emma was able to attend 2 jam-packed days of panels and discussions with members of the at-risk community, people living with ALS and/or FTD, and ALS and FTD clinicians and researchers. The content of the panels covered a range of illuminating topics, including the ethical considerations, mental health applications, and recent medical advancements that correspond with the needs and realities of the at-risk community. Multiple of the panelists, including Matt Harms, an ALL ALS Primary Investigator at Columbia University, spotlighted the PREVENT ALL ALS study over the course of the summit, and spoke on the importance of the inclusion of the at-risk community in medical research and clinical care.
Upon the summit’s conclusion, Emma remarked on the value of the experience. She had learned an incredible amount of information, connected with the community, and felt truly inspired by the amount of care, fortitude, and vulnerability displayed by the members of the at risk, ALS, and FTD communities.