Daniel Barvin

Husband and Father | Breaking down the stigma associated with hereditary disease | Inspiring others to FIND OUT and TAKE ACTION |

[Coya Therapeutics @CoyaTx]

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 diseases like ALS. Daniel joined PNRI’s 2025 Rare Disease Day symposium earlier this year as a genetic variant carrier that puts him at greater risk of developing ALS or FTD.

Check out the full podcast here or wherever you get your podcasts: https://t.co/u3ER3YvTBS

#EndALS #EndFTD #RareDisease #GeneticResearch #CoyaTherapeutics

[Coya Therapeutics @CoyaTx]

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. @Rice_Biz featured Daniel as a rising alumnus and his story Fighting Fate in their Spring issue.

Read the full feature here: https://t.co/OXYLaLRcmu

#EndALS #EndFTD

[Daniel Barvin @FamilialALS]

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

[Daniel Barvin @FamilialALS]

@Jeanc9orf72 Thank you for making the sacrifice to defend our community! You’re efforts will lead to better outcomes for so many

[Daniel Barvin @FamilialALS]

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?

[Coya Therapeutics @CoyaTx]

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/VhscUKMr28

#ALS #ENDALZ #Neurodegenerative #CoyaTherapeutics

[Daniel Barvin @FamilialALS]

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

[Daniel Barvin @FamilialALS]

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.

[Daniel Barvin @FamilialALS]

@ness_atn Thank you for your post on Bruce's diagnosis with FTD and the needs of spouses through their journey. I've got a story about how I'm preparing for an eventual FTD/ALS diagnosis and working to change my destiny, let's chat! https://t.co/YvV2abEq2z

[Daniel Barvin @FamilialALS]

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

[Daniel Barvin @FamilialALS]

https://t.co/LUyI3VS8uJ

[Daniel Barvin @FamilialALS]

In 2019, I discovered I carry the C9ORF72 gene linked to ALS and FTD, shared by my family. Instead of succumbing to despair, I vowed to rewrite my fate. Today, at @CoyaTx, we're expanding our pipeline to fight these diseases. Let's defy the odds together!
#ALS #FTD

[Daniel Barvin @FamilialALS]

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?

[Daniel Barvin @FamilialALS]

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

[Daniel Barvin @FamilialALS]

@americanairlnes you’ve lost a customer today. As we watched our flight come in delayed we worried if we would make our connection. You automatically moved us to the flight tomorrow morning before we even took off.

[Daniel Barvin @FamilialALS]

https://t.co/o3ejQSYh2a #EndTheLegacy #ALSFTD #UnboundGravel @LifeTime_Life @GarminCycling @unboundgravel @VisitEmporia

[Daniel Barvin @FamilialALS]

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

[Daniel Barvin @FamilialALS]

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

[Jean C9orf72 @Jeanc9orf72]

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.

[Jean C9orf72 @Jeanc9orf72]

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.