Lighting the Way to a Cure

  • Financials
  • Patient Library
  • Blog
  • Calendar
en English
en Englishes Spanishfr Frenchde Germanit Italiannl Dutchru Russianzh-CN Chinese (Simplified)ja Japanesehi Hindiiw Hebrewpt Portuguese
FSHD Header Logo
mobile-logo
  • Who We Are
        • About Us
          • History
          • Mission
          • Our Team
        • Our Impact
          • Therapeutic Accelerator
          • Education
          • Advocacy
          • Our Partners
        • Extraordinary Measures
          • 2021 Donor Impact Report
          • 2020 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 Torch Bearer
          • Raise Awareness
          • Volunteer
          • Fundraise
        • Advance Research
          • Patient Involvement
          • Join the True Cost of FSHD Study
          • Clinical Trials
          • Donate tissue
        • 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
          • FSHD Connect Conference
  • Research
        • For Patients & Families
          • Advance Research
          • True Cost of FSHD Study
          • TestFSHD genetic testing
          • Clinical Trials
        • For Researchers
          • Apply for a Grant
          • Grants 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
  • 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
  • JOIN US
  • DONATE

2016 FSHD Patient Connect Conference

Home / FSHD Society News / 2016 FSHD Patient Connect Conference

Posted on: Dec 06, 2016

The FSH Society’s 2016 Patient Connect conference was held on Friday, November 11, (noon to 5:00PM) and Saturday, November 12, 2016 (9:00-5:00 PM) at the Westin Copley Place Hotel in Boston, Massachusetts. The conference brought together hundreds of patients and family members with top researchers, doctors and health experts for two days of immersive learning and community-building. Download the Patient Connect program here.

Presentations and breakout sessions slides can be downloaded by clicking on the highlighted titles* below:

  • FSHD Science 101. Alexandra Belayew, PhD (VIDEO)
  • Genetics and genetic testing. Silvere van der Maarel, PhD (VIDEO)
  • How FSHD affects your body and health. Kathryn Wagner, MD (VIDEO)
  • Getting to know you. Claudio Ordonez, MD (VIDEO)
  • Treatment strategies (panel): Peter Jones, PhD; Yi-Wen Chen, PhD; Scott Harper, PhD (VIDEO)
  • Getting ready for clinical trials. Jeff Statland, MD (VIDEO)
  • Clinical trials: current and impending. Rabi Tawil, MD (VIDEO)
  • FSHD tissue donation registry. Denee Tidwell (VIDEO)
  • Physical Therapy & Exercise (Katy Eichinger, PhD)
  • Respiratory health (Nicholas Hill, MD)
  • Living well: Life with FSHD (Ora Prilleltensky, EdD)
  • Loving well: Living with a person with FSHD (Isaac Prilleltensky, PhD)
  • Pregnancy & women’s health (Kelly Minks, MS, CGC)
  • Waking up your muscles (Lynnette Rasmussen)
  • Managing pain & chronic fatigue (Katy Eichinger, PhD)
  • For the newly diagnosed & mildly affected (Carol Birnbaum, MD)
  • Living well and loving well: Meeting everyone’s needs (Ora Prilleltensky, EdD & Isaac Prilleltensky, PhD)

*If a talk is not highlighted, the slides are not yet available.

Share

Filed Under: FSHD Society News, Fundraising & Events

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
  • 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

Donation Address:

Department 960, P O Box 4106
Woburn, MA 01888    U.S.A.

General Mailing Address:

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

(781) 301-6060

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