Daniel Barvin
@FamilialALS
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Husband and Father | Breaking down the stigma associated with hereditary disease | Inspiring others to FIND OUT and TAKE ACTION |
Joined October 2019
Coya's VP of Operations and Patient Advocacy @FamilialALS recently joined Jack Faris and @AnnaFaris on the @PNRIGenetics Rare Disease, Real Progress podcast to talk about genetic testing and researching important therapies for those who may be predisposed to #neurodegenerative
pnri.org
PNRI CEO Jack Faris and Seattle Children’s CSO Dr. Vittorio Gallo share insights from PNRI’s 2025 Rare Disease Day Symposium on advancing rare disease research through collaboration and innovation.
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Coya's first employee, @FamilialALS, VP of Operations and Patient Advocacy, has been fighting for those suffering from #neurodegenerative diseases most of his life, and he has a good reason - a genetic mutation he's inherited that is a marker for future FTD or ALS development.
business.rice.edu
Daniel Barvin faces the possibility of developing frontotemporal dementia or ALS. His future is uncertain — so he has dedicated himself to so he has dedicated himself to creating a healthier future...
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The fight against genetic ALS and FTD is now the @Rice_Biz cover story! Proud to drive change through @End_The_Legacy and build hope for the neurodegenerative disease community with @CoyaTherapeutics. This is just the beginning #GeneticALS #FTD #ALS
https://t.co/X3wpzQetmH
business.rice.edu
Daniel Barvin faces the possibility of developing frontotemporal dementia or ALS. His future is uncertain — so he has dedicated himself to so he has dedicated himself to creating a healthier future...
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I love bikes, do I ride because of the thrill? Because I know one day I might not be able to? What would you do more if you knew your future would be cut short by a neurodegenerative disease?
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Our VP of Operations and Patient Advocacy @FamilialALS is from a Genetic ALS family. This #BrainDiseaseAwarenessMonth, learn more from Daniel's story by watching his presentation at the Reel Abilities, UP Abilities event in Houston. https://t.co/8QhRm9Olup
#ALS #ENDALZ
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How Genetic Data is Transforming Cancer and Other Disease https://t.co/9FuYVkfpuH via @YouTube To add to my last post, directly from the @AspenInstitute
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The time is now. Preventing the diseases we are genetically predisposed for, is the next generation of healthcare. @End_The_Legacy is leading this fight. Take notice – genetic testing is becoming ubiquitous. Help us fight for your future.
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Heading to NYC for the #AFTD Rising Hope Gala! Thrilled to connect, collaborate, and engage with fellow champions dedicated to forging a future free from FTD. Let's turn hope into action and pave the way towards a world without FTD. #FTD #RisingHopeGala @End_The_Legacy
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Imagine, you'd just married your college sweetheart. Six months later, you find out you're at risk for a genetic mutation that could cause you to lose your mental or physical capacity before leading to an early death. Would you find out if you carried that mutation?
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Little did you know that our flight would arrive early and we would make it to our gate, but we weren’t allowed to board because your seats have been given away. Now we have to spend the night in another city with our 2 young children. Happy holidays everyone
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I'm riding 200 miles in Unbound Gravel to raise awareness & funds for Genetic ALS & FTD: End the Legacy. I invite you to join me in this journey by donating to my campaign to support research, care & advocacy for presymptomatic carriers at risk of ALS and FTD. Every dollar counts
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Listened to your podcast @PeterAttiaMD with @tferriss and honed in on your comment regarding there being no solutions for neurodegenerative diseases. I wanted to key you into my company @CoyaTx and the exciting data we just released in ALS. Let's chat! https://t.co/v21TU5iBMp
businesswire.com
Coya Therapeutics, Inc. (NASDAQ: COYA) (“Coya” or the “Company”), a clinical-stage biotechnology company developing multiple therapeutic platforms intended t...
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To think of the thousands of times in the last nearly 40 years a patronizing neurologist has assured a genetic als family that they have nothing to worry about for their kids , and yet still the field says this, and still they fight any push for earlier treatment.
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ALS should be eligible for NIA / ADRD funding without explicitly making a connection to FTD or LATE ( that connection is implicit regardless!) @alsadvocacy @bsw5020 this is doable and would be a big boost for researchers.
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Coya will present proof-of-concept clinical data from two open-label academic studies conducted at @MethodistHosp at multiple scientific conferences throughout the year. Learn more: https://t.co/DgIiEAeaEH $COYA
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Thank you @LayniedratchC for giving me a platform!
Always amazed by Daniel’s selflessness and willingness to advocate for the familial FTD/ALS community. Much gratitude @FamilialALS , you continue to make a difference!!
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https://t.co/6eG0RJJrVw A touching tale of decisions our community must face.
elle.com
Katie C. Reilly explores the best course of action when one is at risk of dying from an incurable disease.
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