Meet Mindy Uhrlaub

We’re excited to introduce you to the always interesting and insightful Mindy Uhrlaub. We hope you’ll enjoy our conversation with Mindy below.

Hi Mindy, really happy you were able to join us today and we’re looking forward to sharing your story and insights with our readers. Let’s start with the heart of it all – purpose. How did you find your purpose?

Many years ago, I read King Leopold’s Ghost by Adam Hochschild. The book changed my life. It told the story of Congo under King Leopold II of Belgium. Set in the late 1880’s, the history book read like a novel, depicting horrible conditions for African natives. I started reading up about present-day Congo and realized that things in the Democratic Republic of Congo are very much the same as in the 1880’s. My interest in DRC inspired tme to travel there in 2011 and 2013, to take testimony of rape survivors, and to write a novel, called Unnatural Resources. Seeing the resilience of the women in DRC really propelled me into activism.

As my novel was being published, my husband was diagnosed with stage 4 lymphoma. When he started chemo, my mom was diagnosed with ALS, a fatal, neurodegenerative disease for which there is no cure. In addition, I was raising two sons, one of whom had to be committed to a therapeutic boarding school. Then I was diagnosed as being a carrier of the gene that was causing my mom’s ALS. I used the skills I leaned in Congo to become an activist for my family. With three first-order relatives in life-threatening situations, my purpose was clear: live long enough to save my children from ALS. Since 2018, I’ve been searching for a cure, and I will find on, if it’s the last thing I do.

Thanks for sharing that. So, before we get any further into our conversation, can you tell our readers a bit about yourself and what you’re working on?

Because I co-founded a nonprofit called End the Legacy (an organization for carriers of genes that cause ALS) I won the Harvey and Bonny Gaffen 2025 Award for Advancements in ALS at the Les Turner ALS Foundation. I also participate in more than 20 longitudinal studies of ALS, and I’ve been a peer mentor at I Am ALS for many years. Last year, I worked on a committee at the National Academy of Science, Engineering, and Medicine to co-author the report, Living With ALS, which was submitted to Congress. In October, 2025, I’ll receive the Fran Delaney Challenge and Respect Award from ALS TDI for my ALS activism.

My new book, Last Nerve: A Memoir of Illness and the Endurance of Family, is now on tour! Since its publication in May, 2025, it was an overnight Amazon best-seller and just won the Nonfiction Authors Association’s Silver Medal. Since June, I’ve done book events in Philadelphia, San Francisco, Chicago, Boston, and Oakland. I’ve also been interviewed on CBS and NBC, and I’ve appeared in more than a dozen podcasts and newspaper articles. I’ll continue to spread awareness about Genetic ALS at the ALS TDI White Coat Affair in Boston (10/18), at a reading in Corsicana, Texas (11/13), and at the ALS Network’s Walk and Roll event in LA (11/16).

There is so much advice out there about all the different skills and qualities folks need to develop in order to succeed in today’s highly competitive environment and often it can feel overwhelming. So, if we had to break it down to just the three that matter most, which three skills or qualities would you focus on?

1. Activism is a calling. You can’t just wake up one day and decide to be an activist. The trick is to listen carefully enough to the calling to want to educate yourself on something that you find important.

2. When the chips are down, love the world harder. There is no place in activism for cynics. To really tap into the power of your convictions, you need to have hope. This helps with staying focused and not giving up.

3. Exercise compassion with yourself. Allow yourself to screw up and still love yourself for it. Self-care, whether it’s a walk in nature, a long bath, a mani-pedi, a sweaty workout, or eating a piece of chocolate cake, is all valid!

How can folks who want to work with you connect?

My favorite kinds of collaborators tend to be people who either disagree with me or have not paid any attention to my stuggles. I carry a gene for a fatal neurodegenerative disease. I’m generally overlooked by the scientific community because I’m currently asymptomatic. Pharmaceutical companies don’t want to develop products to prevent ALS because it’s more profitable to market a drug for “actual” patients. So, I love talking to pharma folks. In fact, one of my best readings was for a room full of 70 biotech people. Because their work is in a lab, they sometimes don’t see the patients they could be helping. Now, I have several speaking engagements for pharma companies, and I’m excited!

I also recently spoke to some senators who were unfamililar with the genetic discrimination I have to endure. Just by carrying an ALS gene, I can be denied long-term care insurance, disability insurance, and life insurance. By educating senators, I can help to change policy around funding for medical research, insurance for patients, and general stigma toward genetic carriers. To collaborate with me is to move the needle on ALS.

I can be reached on my website, www.mindyuhrlaub.com, or on Instagram @mindywrites1.

Contact Info:

Image Credits

Author photo by Kathleen Harrison.

Book cover design by Greenleaf Book Group.

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