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 Peer Mentor Team at I AM ALS, 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 book, Last Nerve: A Memoir or Illness and the Endurance of Family. 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 enrolled in longitudinal research to study how a presymptomatic carrier of C9orf72 ALS responds to an ALS drug.
Mindy was nominated to serve on the committee of the National Academy of Science, Engineering, and Medicine and published a report on June 18, 2024 on how to make ALS a livable disease. The committee was made up of neurologists, bio-ethicists, nurses, palliative care specialists, pharma, and people with lived experience with ALS. Mindy was there to carry the flag for the Familial ALS Community.
Awards
LAST NERVE:
A Memoir of Illness and the Endurance of Family
Mindy’s latest book follows her 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 Mindy found out she was a carrier of the fatal C9orf72 gene, she didn't get mad; she 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
PREVENT ALLALS 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
Everything ALS's Asymptomatic Gene Carrier Study
Interviews and Articles
Click on the images below to watch or read.
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 Mindy 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.
Mindy's Time Bomb Story
2024 I Am ALS Summit: Youth and ALS Panel Youth and ALS Panel. Mindy’s presentation begins at 42 minutes.
Featured on I’m Dying to Tell You Podcast
Interviewed on Living Chronic - Click to download the audio file.
ABC News Interview on KGO-TV
UCSF Lunch & Book Signing
WFLD Chicago Interview
I Am ALS Author’s Panel
ALS TDI Award Presentation
KDVR Fox Colorado Interview
Fox Dallas Interview
LA Walk and Roll Interview (37:09 to 40:15) | Award (1:23:00 to 1:28:11)
Stat News Op-Ed - I have a genetic mutation linked to ALS. The Trump administration terrifies me
Marin Magazine Article - Advocating for an ALS Cure: Mindy Uhrlaub’s Memoir
Pacific Sun Article - Battling ALS, Researchers Strive to Find Treatments and a Cure
Brain & Life Article - Life with a Genetic Risk of ALS