ALS Activism
Mindy Uhrlaub is a carrier of the fatal C9orf72 gene and is an activist for genetic carriers of ALS. She is a member of the Familial ALS Team and the Peer Mentor Team at I AM ALS. She is a founding member of Genetic ALS/FTD: End the Legacy, and participates in more than a dozen longitudinal studies of ALS. She is also the author of the forthcoming book, A War of Nerves: An ALS Memoir. Uhrlaub has testified before the National Institutes for Health and the Food and Drug Administration, demanding early access to life-saving drugs for presymptomatic carriers of genetic ALS. She is being screened for the first ever study to see how a presymptomatic carrier of C9orf72 ALS responds to a drug in a trial.
A War of Nerves: An ALS Memoir
My forthcoming book will follow my personal journey with ALS.
Articles
ALS has prompted me to write several articles for those living with a loved one with ALS.
I Am ALS
My relationship with my mom when she was dying of ALS
I Am ALS
Knowing your audience when you talk about ALS
I Am ALS
How I Talked to My Teens About My Genetic Status
Elephant Journal
I am 52—I Don’t Have time to Sit idly by & Await Paralysis.
Medical Research
Carrying the C9orf72 gene has prompted me to write several articles about relationships against the backdrop of ALS
Everything ALS Speech Study
ARTFL-LEFFTDS Study at UCSF
ALLFTD Linkd Study
ALLFTD Brains, Decisions Study
Bluefield Neurofilament Study
Genes, Brains, Decisions at UCSF
UCSF Wearables Study
MGH/Harvard DIALS Study
MGH Gut Microbiome Study
Columbia University ALS Families Study
NIH/NINDS Neurodegenerative Disorders: ALS/FTD
FDA Testimony
See the Public Version of End the Legacy's January 2023 Presentation to the FDA. Mindy's portion is from 28:55 to 34:18