Skip to main content
Sister Publication Links
  • ESG: THE IMPLEMENTATION IMPERATIVE
Subscribe
  • Sign Up Free
  • Login
  • Subscribe
  • News
    • Current News
    • Providers
    • Insurance
    • Digital Health
    • Government
    • Finance
    • Technology
    • Safety & Quality
    • Transformation
    • People
    • Regional News
    • Digital Edition (Web Version)
    • Patients
    • Operations
    • Care Delivery
    • Payment
    • Midwest
    • Northeast
    • South
    • West
  • Unwell in America
  • Opinion
    • Bold Moves
    • Breaking Bias
    • Commentaries
    • Letters
    • Vital Signs Blog
    • From the Editor
  • Events & Awards
    • Awards
    • Conferences
    • Galas
    • Virtual Briefings
    • Webinars
    • Nominate/Eligibility
    • 100 Most Influential People
    • 50 Most Influential Clinical Executives
    • Best Places to Work in Healthcare
    • Excellence in Governance
    • Health Care Hall of Fame
    • Healthcare Marketing Impact Awards
    • Top 25 Emerging Leaders
    • Top 25 Innovators
    • Diversity in Healthcare
      • - Luminaries
      • - Top 25 Diversity Leaders
      • - Leaders to Watch
    • Women in Healthcare
      • - Luminaries
      • - Top 25 Women Leaders
      • - Women to Watch
    • Digital Health Transformation Summit
    • ESG: The Implementation Imperative Summit
    • Leadership Symposium
    • Social Determinants of Health Symposium
    • Women Leaders in Healthcare Conference
    • Best Places to Work Awards Gala
    • Health Care Hall of Fame Gala
    • Top 25 Diversity Leaders Gala
    • Top 25 Women Leaders Gala
    • - Hospital of the Future
    • - Value Based Care
    • - Hospital at Home
    • - Workplace of the Future
    • - Digital Health
    • - Future of Staffing
    • - Hospital of the Future (Fall)
  • Multimedia
    • Podcast - Beyond the Byline
    • Sponsored Podcast - Healthcare Insider
    • Video Series - The Check Up
    • Sponsored Video Series - One on One
  • Data Center
    • Data Center Home
    • Hospital Financials
    • Staffing & Compensation
    • Quality & Safety
    • Mergers & Acquisitions
    • Data Archive
    • Resource Guide: By the Numbers
    • Surveys
    • Data Points
  • MORE+
    • Contact Us
    • Advertise
    • Media Kit
    • Newsletters
    • Jobs
    • People on the Move
    • Reprints & Licensing
MENU
Breadcrumb
  1. Home
  2. Clinical
Sponsored Content Provided By Biogen Inc.
This content was created by and paid for by an advertiser. The Crain's editorial department was not involved in the creation of this content.
December 01, 2021 01:00 AM

The impact of genetic ALS

  • Tweet
  • Share
  • Share
  • Email
  • More
    Reprints Print
    Chris Henderson headshot

    Chris Henderson is senior vice president and head of research at Biogen. 

    For many patients and caregivers with neurological diseases, receiving a diagnosis often triggers a complex series of emotions. And while it’s an answer that helps provide clarity, it’s not always the answer one wants to hear. This reality is especially evident when genetics are involved, as the decision to get tested comes with potentially life-altering outcomes – not just for yourself, but for your entire family.

    Jeremy S. exemplifies this challenge. With the passing of his uncle and the gradual confirmation that a number of his family members carry C9orf72 mutations, which can lead to either amyotrophic lateral sclerosis (ALS) or frontotemporal dementia (FTD), Jeremy began looking into educational information around genetic ALS. His decision to get tested was deeply personal and, despite the results, he has shown great resilience and says that his biggest fear is failing to seize the day.

    Jeremy’s story with ALS

    In 2015, Jeremy received news that his uncle had passed away from ALS. It was the first time a person in his family had been diagnosed with this disease, and while Jeremy was understandably upset, he assumed it was an isolated incident. Unbeknownst to Jeremy, however, his uncle had suffered from a form of ALS caused by a genetic C9orf72 expansion mutation – meaning that both he and his entire family would be at risk of inheriting the gene causing the disease.

    Fast forward to 2019 and Jeremy received a distressing phone call. It was his cousin Jon, who explained that both Jon and Jon’s older brother, Seth, had been recently diagnosed with ALS caused by the C9orf72 expansion. Immediately, Jeremy understood that he was at risk and knew that he needed to get both himself and his mother tested. After receiving the results, Jeremy learned an unfortunate and devastating truth: they would become the fourth and fifth members of his family to test positive for the gene responsible for 20-30 percent of genetic ALS cases worldwide.

    “After understanding the implications that this genetic defect would have on my entire family, I was simply devastated. Nothing can prepare you for something like this,” Jeremy explains. “One of the most difficult things to deal with is the uncertainty. While I’ve been told I will definitely develop one of the diseases associated with the mutation, nobody can give me a timeframe. Even within my own family, you can see the variability in the [age of] onset of the disease.”
     

    Biogen’s story with ALS

    ALS is a rare, fatal neurodegenerative disease characterized by motor neuron loss in the brain and spinal cord. At present, about 10 percent of ALS cases are caused by a known genetic mutation that can be passed from one generation to another, while a staggering 90 percent have no known cause. Nevertheless, scientists believe it is likely that additional genetic mutations have yet to be identified – underscoring the importance of Biogen’s continued work in understanding ALS genetics.

    For nearly a decade, Biogen has remained unwavering in its commitment to furthering ALS research in an effort to bring therapies to people living with this rapidly progressing neurological condition. Starting in 2012, the company began a discovery and development program, carrying out a Phase 3 clinical trial called EMPOWER for broad ALS. Unfortunately, the trial failed to meet its primary endpoint and no efficacy was seen in individual components of function or survival – though much valuable information on the disease course in individual patients was collected.

    It was this data, and the insights they provided on the individual level, that shifted Biogen’s focus to genetic ALS, with the goal of bringing a potential therapy to patients in need.

    “Our understanding of ALS has really exploded over the last 10 years,” explains Chris Henderson, senior vice president and head of research at Biogen. “We now understand the genetics of many human cases, which has provided us with the ability to directly target the causal genes in those patients. These genetics have allowed scientists to create animal models in the laboratory that quite faithfully represent several of the degenerative processes going on in ALS patients. By studying these models, as well as human tissue samples, researchers around the world have brought to light new biologies that we now believe to be involved in all forms of the disease. And each new biology is a potential target for a therapeutic, even in patients that have ALS with no known genetic cause.”

    Watch Jeremy’s story here. 

    Sponsored by

    Biogen logo

    Most Popular
    1
    More healthcare organizations at risk of credit default, Moody's says
    2
    Centene fills out senior executive team with new president, COO
    3
    SCAN, CareOregon plan to merge into the HealthRight Group
    4
    Blue Cross Blue Shield of Michigan unveils big push that lets physicians take on risk, reap rewards
    5
    Bright Health weighs reverse stock split as delisting looms
    Sponsored Content
    Get Newsletters

    Sign up for enewsletters and alerts to receive breaking news and in-depth coverage of healthcare events and trends, as they happen, right to your inbox.

    Subscribe Today
    MH Magazine Cover

    MH magazine offers content that sheds light on healthcare leaders’ complex choices and touch points—from strategy, governance, leadership development and finance to operations, clinical care, and marketing.

    Subscribe
    Connect with Us
    • LinkedIn
    • Twitter
    • Facebook
    • RSS

    Our Mission

    Modern Healthcare empowers industry leaders to succeed by providing unbiased reporting of the news, insights, analysis and data.

    Contact Us

    (877) 812-1581

    Email us

     

    Resources
    • Contact Us
    • Advertise with Us
    • Ad Choices Ad Choices
    • Sitemap
    Editorial Dept
    • Submission Guidelines
    • Code of Ethics
    • Awards
    • About Us
    Legal
    • Terms and Conditions
    • Privacy Policy
    • Privacy Request
    Modern Healthcare
    Copyright © 1996-2023. Crain Communications, Inc. All Rights Reserved.
    • News
      • Current News
      • Providers
      • Insurance
      • Digital Health
      • Government
      • Finance
      • Technology
      • Safety & Quality
      • Transformation
        • Patients
        • Operations
        • Care Delivery
        • Payment
      • People
      • Regional News
        • Midwest
        • Northeast
        • South
        • West
      • Digital Edition (Web Version)
    • Unwell in America
    • Opinion
      • Bold Moves
      • Breaking Bias
      • Commentaries
      • Letters
      • Vital Signs Blog
      • From the Editor
    • Events & Awards
      • Awards
        • Nominate/Eligibility
        • 100 Most Influential People
        • 50 Most Influential Clinical Executives
        • Best Places to Work in Healthcare
        • Excellence in Governance
        • Health Care Hall of Fame
        • Healthcare Marketing Impact Awards
        • Top 25 Emerging Leaders
        • Top 25 Innovators
        • Diversity in Healthcare
          • - Luminaries
          • - Top 25 Diversity Leaders
          • - Leaders to Watch
        • Women in Healthcare
          • - Luminaries
          • - Top 25 Women Leaders
          • - Women to Watch
      • Conferences
        • Digital Health Transformation Summit
        • ESG: The Implementation Imperative Summit
        • Leadership Symposium
        • Social Determinants of Health Symposium
        • Women Leaders in Healthcare Conference
      • Galas
        • Best Places to Work Awards Gala
        • Health Care Hall of Fame Gala
        • Top 25 Diversity Leaders Gala
        • Top 25 Women Leaders Gala
      • Virtual Briefings
        • - Hospital of the Future
        • - Value Based Care
        • - Hospital at Home
        • - Workplace of the Future
        • - Digital Health
        • - Future of Staffing
        • - Hospital of the Future (Fall)
      • Webinars
    • Multimedia
      • Podcast - Beyond the Byline
      • Sponsored Podcast - Healthcare Insider
      • Video Series - The Check Up
      • Sponsored Video Series - One on One
    • Data Center
      • Data Center Home
      • Hospital Financials
      • Staffing & Compensation
      • Quality & Safety
      • Mergers & Acquisitions
      • Data Archive
      • Resource Guide: By the Numbers
      • Surveys
      • Data Points
    • MORE+
      • Contact Us
      • Advertise
      • Media Kit
      • Newsletters
      • Jobs
      • People on the Move
      • Reprints & Licensing