December 7, 2023

 Today we are humbled to share Lisa’s story, a journey from self-sufficiency to reliance due to ALSP, a rare genetic condition that has profoundly impacted her life.

Her narrative vividly illustrates the life-altering shift from independence to depending on a caregiver, a reality many in our ALSP community face.

This story sheds light the invaluable role care partners play, becoming lifelines that uphold the quality of life for those with ALSP. Lisa’s experience is a mirror to many, underscoring the strength found in accepting support. Let’s honor our caregivers and the profound impact they make, every single day. 💜

Lisa’s story, a Find Your Voice narrative, opens a heartfelt window into shared experiences, offering inspiration and a deep sense of community for all of those navigating the complexities of ALSP.

ALSP patients on average are diagnosed at 43 years old, they are young, and our system is not prepared to care for a patient who could live another 40 years with dementia and mobility issues. We know they will progress during the HSCT procedure before the disease progression stops. We know if they are considered for a drug trial they will progress until that drug starts working. If we have the means to keep them alive, we better figure out how to take care of them with quality of life for the long term.