Your support fuels our research to #EndALS! Donate Now
12/3/2020
Daniel Barvin: Working to Create a Future Without Familial ALS

Finding out a loved one has ALS can be hard enough. But for people whose family members test positive for one of the genetic mutations behind familial ALS, it can bring a whole other set of issues to deal with – knowing that they might also inherit the mutation, and that they might pass it down to your children.

Daniel Barvin knows this firsthand – a number of people in his family have passed from ALS, and he himself is a presymptomatic carrier, meaning it may only be a matter of time until he himself begins to show signs of the disease. Today, he joins us on Endpoints to discuss what it’s like to know that ALS is likely part of his future, and what he’s doing to change things – both for himself, others with ALS, and his own newborn son.  

Donate to ALS research in honor of Daniel here.

Finding out a loved one has ALS can be hard enough. But for people whose family members test positive for one of the genetic mutations behind familial ALS, it can bring a whole other set of issues to deal with – knowing that they might also inherit the mutation, and that they might pass it down to their children.

Daniel Barvin knows this firsthand – a number of people in his family have passed from ALS, and he himself is a pre-symptomatic carrier, meaning it may only be a matter of time until he begins to show signs of the disease. Today, he joins us on Endpoints to discuss what it’s like to know that ALS will likely be in his future, and what he’s doing to change things – both for himself, others with ALS, and his own newborn son.  

Donate to ALS research in honor of Daniel here.

Thank you to our Sponsors
Cytokinetics
Biogen
MT Pharma America
Apellis
Insource Services, Inc
Novartis