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.
In February 2023, Mindy was nominated to serve on the committee of the National Academy of Science, Engineering, and Medicine to write a report on how to make ALS a livable disease. The committee is made up of neurologists, bio-ethicists, nurses, palliative care specialists, pharma, and people with lived experience with ALS. Mindy is there to carry the flag for the Familial ALS Community, and the fifteen-month project will run through spring of 2024.
Awards
A War of Nerves: An ALS Memoir
My forthcoming book will follow my personal journey with ALS.
Articles
Carrying the C9orf72 gene has prompted me to write several articles about relationships against the backdrop of 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
When I found out I was a carrier of the fatal C9orf72 gene, I didn't get mad; I got active.
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
ALS TDI's ARC Motion Tracking Study
FDA Testimony
See the Public Version of End the Legacy's January 2023 Presentation to the FDA. Mindy's portion is from 23:30 to 28:47.
Interview on Lou Gehrig Day at Oakland A’s Game
I had the honor to be in the press box at the Oakland A's game to discuss ALS on Lou Gehrig Day.
Big Feelings: Generational Trauma in Genetic ALS
A presentation given by the Familial Team at I Am ALS on June 15th, 2023. Mindy’s presentation is minutes 9:42 to 14:27.
What's in a Gene: An Introduction to Familial ALS
An ALS webinar. Mindy’s presentation is minutes 31.58 to 40.10.
National Society of Genetic Counselors Webinar
Mindy and members of the Familial ALS Community presented a webinar about genetic testing.