During this year's alumni reunion Partio, we caught up with some alums right on campus. One of those alumni was Daniel Barvin ‘18.
Daniel has held many different roles, in both financial advising and oil and gas sectors, and eventually earned an MBA from Rice Business in 2018. But in December of that same year that he tested positive for the C9orf72 gene expansion, which means may develop ALS later in life. Daniel’s father, aunt, and uncle all have ALS.
In 2020, he began volunteering at I AM ALS, and also joined Coya Therapeutics, a clinical-stage cell therapy platform company developing first-in-class therapeutics for ALS and other neurodegenerative diseases, where he is currently VP of operations and patient advocacy.
In this episode recorded in the Rice Alliance space in McNair Hall, Daniel chats with host Maya Pomroy '22 about his journey, his passion for ALS research, and building community and support online with others affected by this disease.
Owl Have You Know is a production of Rice Business and is produced by University FM.
27:20 - We are in this age where we all know someone who's dealt with a neurodegenerative disease… [27:32] And Coya is looking to change what that experience is, change what it means to be diagnosed with these diseases, and show that through Houston's effort, through Rice's effort, through all of our efforts, we can change the future of what it means to have this disease and have it not be a death sentence.
Changing the future of what it means to have ALS through Coya
18:01 - I AM ALS has the beauty of being patient-led, letting anyone who comes say, "We'll let you start a team. We'll provide resources in terms of team management." And that was just the perfect place for us to start this ferocious movement.
How I AM ALS helped launch the movement
Empowering ALS patients with his story11:34 - The silver lining was after we came back from vacation, I was asked to do a talk for a high school, helping explain my story after an ALS documentary was shown. And I went and spoke at Carnegie Vanguard High School in front of the entire student body—800 students—and told them the story of my life. And the connection was palpable. And I said, "This is it. This is what I need to be doing."
16:33 - What I said when I was doing the advocacy part, I said I'm going to make less ALS patients. I'm going to make better ALS patients because I think that if I eventually get this disease, The fact that I'm able to plan, prepare, connect, comprehend, you know, this entire life of advocacy, and then I eventually get it, my mindset will most likely be far different than someone who just has to live with it.
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