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Mindy Uhrlaub

@mindywrites1

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Author, Last Nerve, Winner of the 2025 Les Turner Advancements in ALS Award.
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Greetings from the NEALS conference in Clearwater, FL. I just ran into my friend, Won Lee, a pulmonary specialist who I originally met three years ago. We worked together for a year and a half with sixteen others on a report at the National Academy of Science on how to make ALS a livable disease. That impactful report, Living with ALS, published in 2024, was only possible with collaboration of all committee members. As I sit in on presentations at NEALS this week, the spirit of collaboration feels palpable. It reminds me that we get closer to cures for ALS and FTD every time we cooperate and share information. And it's pretty awesome to see a thousand ALS stakeholders assembled under one roof, sharing research ideas for people like me and my genetic ALS/FTD community. Thank you to all of my science-y allies! #bigbrains #genetics #LastNerve #ALS #FTD @end_the_legacy @everything.als @cure_c9 @alstdi @lesturnerals @youralsnetwork @alshopefoundation @ortiumnealsefac @gently_as_she_goes @cassandraelizzabeth @stitchingstrength @runningmama0522 @daniel.barvin by @mindywrites1
Do you have a superpower? Join me on October 28th at 4pm Pacific, and we'll vamp on how advocacy and memoir intersect. You are the only one who is an expert on your ALS story, and people want to hear from you! #memoir #LastNerve #C9orf72 #storytelling @everything.als @end_the_legacy @alstdi @lesturnerals @cure_c9 @youralsnetwork by @mindywrites1
One of the silver linings of carrying a gene for a fatal neurodegenerative disease is the total badassery of my fellow community members. This is Michael, a kind, funny, sports-loving dog owner who, in his spare time, bravely fights the specter of ALS/FTD. Getting to spend a few days with him and 70 other genetic carriers gives me hope for my own future. I'm proud to be his friend and looking forward to the next End the Legacy Community Summit. #ALS #FTD #genes #community #Sacramento @end_the_legacy @youralsnetwork @ALSTDI @lesturnerals by @mindywrites1
While you were sleeping, we were hard at work, putting together swag bags, making plans for the 3rd annual in-person End the Legacy Summit. Okay, maybe we goofed around, ate pizza and made crude jokes, but we got the job done! Hope to see you there. #Sacramento #Genetics #ALS #FTD @end_the_legacy @youralsnetwork @everything.als @ALSTDI @alshopefoundation by @mindywrites1
So happy to have met the lovely and talented Jessica Walton at WriterCon. We talked about all things book, shared stories about our upbringing, vamped on national security, and even played Scrabble! Making new friends is the best part about being on the road with Last Nerve. #writercon #booktour #advocacy #memoiristsofinstagram @elevate_comm @greenleafbookgr @end_the_legacy @jessica2walton by @mindywrites1
So excited to be teaching about memoir as advocacy at WriterCon in OKC. Put your thinking caps on and join me from 9:30 to 10:15 on Friday, September 4th in the Balinese Room. Now it's personal! #memoir #advocacy #activism #als #writercon26 @greenleafbookgr @elevate_comm by @mindywrites1
Thank you to everyone who donated to my fundraising page for ALS TDI's Walk for Research! There were nearly A HUNDRED generous and kind friends and family members who helped me reach my $10,000 goal. I feel very loved. If you still want to donate, you can do it by August 30th at: https://fundraise.als.net/team/mindy #alsawareness #c9orf72 #ageofonset @alstdi @alstdi_events by @mindywrites1
Https://alswalkforresearch.als.net/teams/mindy/ by @mindywrites1
How do you live with the ever-looming uncertainty of being a gene carrier for a fatal disease? Amyotrophic lateral sclerosis—better known as ALS or Lou Gehrig’s disease—was long believed not to be genetic. Today, however, research shows that 10-15% of cases are linked to the mutation of various genes. The journey of potential future illness is one Mindy Uhrlaub has navigated since 2018, when she learned that she carries the C9OF72 genetic mutation. Since losing her grandfather and then her mother to ALS, Mindy has navigated the precariousness of questioning every symptom she develops, the hard knowledge that her children could also be carriers, and the decisions that come with any life-changing diagnosis: how will this knowledge impact my approach to the present and the future? In Mindy’s case, it has led her to advocacy and authorship. She is a founder of the End the Legacy community for carriers of ALS and FTD (frontotemporal degeneration) and the author of the Amazon bestseller, “Last Nerve: A Memoir of Illness and the Endurance of Family.”  Everyone with chronic illness or the genetic potential to develop it must select a unique path. Mindy has chosen to immerse herself in the promise the future holds. She takes every preventative step available to her, including avoiding chemical exposure and inflammatory foods and taking an ALS drug prophylactically. Through End the Legacy, she and other community members pursue policy change and education through webinars and summits. She participates in numerous studies and shares the struggle of facing down the inevitable emotional triggers. For Mindy, this approach is not about fearlessness but about devoting her time, and her heart, to the life-affirming aspects of her unpredictable situation. Hear Mindy's story in this week's episode of Major Pain. #als #amytrophiclateralsclerosis #podcast #health #geneticdisease by @mindywrites1
Let’s talk writing communities! by @mindywrites1
Let's talk wordy! Can't wait to get together with my fellow WOM's for a reunion, a chat about writing communities, and a book signing at Napa Bookmine. Be there on Sunday, August 2 at 2pm to geek out with us. #writeon #localauthors #newreleases #bookishbabes #literaryladies @mariannelonsdale @teri_stevens @jilanne2694 @janine.kovac by @mindywrites1
In the era of the 2nd Ice Bucket Challenge, Mindy is a fellow C9 carrier who is turning the average age of C9Orf72 ALS/FTD onset in a month. To celebrate, she is fundraising towards a cure for C9. So she gets to live 🙏🏼 You can donate on my Instagram page or on her website mindyuhrlaub.com and do check it out, as she is an amazing, award-winning author who writes about what it’s like to be a C9 carrier—like me. You can meet either @mindywrites1 or me in Sacramento at the @end_the_legacy summit in September! Just a few spots are left, so register now ✨ Let’s #curec9! #mdphdtobe #CureALS #CureFTD @searchforaselfcure by @mindywrites1

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