Lighting the Way to a Cure

  • Financials
  • Patient Library
  • Blog
  • Calendar
FSHD Header Logo
mobile-logo

  • Who We Are
        • About Us
          • History
          • Mission
          • Our Team
          • Financials
        • Our Impact
          • Therapeutic Accelerator
          • Education
          • Advocacy
          • Our Partners
        • Journey To A Cure
          • 2022 Donor Impact Report
  • Understanding FSHD
        • What is FSHD
          • Symptoms
          • Diagnosis
          • Early-onset FSHD
          • Genetic Testing
        • Living with FSHD
          • Newly Diagnosed?
          • Finding Care
          • Symptom Management
          • Patient Library
        • FSHD University
          • Physical Health
          • Wellness
          • Research
  • Get Involved
        • Support Us
          • Ways to Give
          • Become a Torchbearer
          • Raise Awareness
          • Volunteer
          • Fundraise
        • Advance Research
          • What is a Clinical Trial?
          • Your Involvement Matters
          • Current Trials & Studies
        • Connect
          • Find Your Local Chapter
          • Join the Community
          • World FSHD Alliance
          • Online Communities
        • Events
          • Walk & Roll to Cure FSHD
          • Events Calendar
          • FSHD 360 Regional Conferences
          • World FSHD Day
  • Research
        • For Patients & Families
          • Advance Research
          • True Cost of FSHD Study
          • TestFSHD genetic testing
          • Current Trials and Studies
        • For Researchers
          • Apply for a Grant
          • Research We Have Funded
          • Resources
          • Int’l Research Congress
        • For Clinicians
          • FSHD Masterclass
          • ICD-10
        • For Industry
          • Therapeutic Accelerator
          • Clinical Trial Research Network
          • Drug Development Pipeline
          • Voice of the Patient Report
          • Project Mercury
  • News
    • Media Library
    • Blog
      • Living with FSHD
        • Health and Medicine
        • PT and Exercise
        • Tips and Tricks
        • Mental Health
      • FSHD Society News
      • FSHD Research
      • Fundraising & Events
      • Media & PR
    • FSHD Society Radio
    • The FSHD Advocate
  • Search
  • Financials
  • Patient Library
  • Blog
  • Calendar
  • JOIN US
  • Donate
  • JOIN US
  • Donate

Feeling the urgency of NOW. Time = Lives

Home / FSHD Research / Feeling the urgency of NOW. Time = Lives

Posted on: Nov 05, 2020

End of year 2020Last year, the FSHD Society launched an aggressive initiative to accelerate therapeutic development in FSHD. Because of our donors’ commitment and investment, we hosted the first Industry Collaborative Workshop for Therapy Development in FSHD with pharmaceutical companies, researchers, and regulatory and governmental agencies to identify the major obstacles to clinical trial development and regulatory approval of effective therapies for FSHD.

This year, we had planned a targeted strategy focused on four key areas:

• better, cheaper, and faster genetic testing;
• a blood biomarker test to indicate whether or not a drug is working;
• integration of global patient registries to gather robust natural history data;
• Voice of the Patient Forum to provide the FDA with FSHD patient-informed evaluation criteria.

These initiatives are essential to our goal of delivering therapies to our families by 2025. And despite the immense challenges of this year, we have persevered. We have to, because TIME = LIVES. Every day of delay in carrying out our work is a day that symptoms worsen and our loved ones suffer.

Your support literally keeps us going. Our Board of Directors, comprised almost entirely of individuals and family members who live with FSHD, has pledged $500,000 toward our year-end campaign and challenges you to match their generosity. The work we have begun and the progress we have achieved require that we commit additional funding and staff time to key projects and research initiatives. Between now and the end of 2020, we need to raise the financial resources necessary to advance these projects and ensure we can complete them. Please consider making a gift at this most critical moment. Thank you.

Learn more about how we are putting your donations to work!

 

Share

Filed Under: FSHD Research

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

SEARCH

Categories

  • FSHD Research
  • FSHD Society News
    • Extraordinary Measures
    • Journey to a Cure
  • Fundraising & Events
  • General
  • Living with FSHD
    • Health and Medicine
    • Mental Health
    • PT and Exercise
    • Tips and Tricks
  • Media & PR

Sign up for Email Alerts

Stay up to date with the latest FSHD news and updates from FSHD Society.

CONNECT WITH US

Proud Member World FSHD Alliance (1)
Footer-Logo-min

General Mailing Address:

75 North Main Street, Suite 1073
Randolph, MA 02368 U.S.A.

Mail Donations to:

FSHD Society
P.O. Box 411617
Boston, MA 02241-1617

(781) 301-6060

  • DONATE
  • Donate
  • Join Us
  • Inclusivity & Equity
  • Privacy Policy
  • Contact Us
  • Glossary Of Scientific Terms
Digital Marketing by