Community Outreach

Peter and Takako Jones Lab

We are excited to have recently been appointed to the FSH Society's Ambassador Program, a group of FSHD patients and researchers who have demonstrated a commitment to finding a cure for FSHD. This team is charged with spreading awareness about FSHD in tandem with the #CureFSHD campaign and will act as public representatives and spokespeople for the FSH Society.

Chris Carrino

In 2016, we took part in a fantastic production by Yahoo Sports NBA columnist Adrian Wojnarowski for The Vertical titled, "Relentless voice: The fight of Chris Carrino." This focuses on Chris Carrino, a sportscaster for the Brooklyn Nets and NFL, his experiences living and working with FSHD, and his foundation dedicated to finding a cure. We discuss how funding by the Chris Carrino foundation for FSHD has enabled us to generate an FSHD-like mouse model and advance our FSHD CRISPR work.

FSH Society

In 2012 and 2013 we participated in filming public service and fundraising announcement videos for the FSH Society.

Steven Blier and Kelli O'Hara speak out for FSH Muscular Dystrophy.

Glee star Max Adler and friends - It's Time For a Cure for FSH Muscular Dystrophy

Events

We are happy to attend and participate in patient events and fundraisers for FSHD in the mountain west and northern California to meet patients and their families and discuss recent advances in FSHD research.

In addition, we have made presentations for elementary school classes, adult education classes and community groups to teach and promote science and biomedical research.

Events recently attended

  • 2018 FSH Society International Patient Connect Meeting, Las Vegas, NV
  • 2017 FSH Society Los Angeles Patient Connect Meeting, Santa Monica, CA
  • 2017 Songs in the Key of Steven Blier, FSH Society benefit concert, San Francisco, CA
    FSH Society benefit concert
  • 2017 FSHD Family Day Conference, San Francisco, CA
  • 2017 Hosted riders for C2C4FSHD Chris Carrino Foundation for FSHD Seattle to New York City Bicycling Journey to Raise Awareness for FSHD
    Chris Carrino Foundation bike riders
  • 2016 FSH Society Patient Connect meeting, Boston, MA
  • 2016 The FSH Society Boston Celtics TD Garden Basketball Tournament fundraiser, Boston, MA
  • 2015 The Chris Carrino Foundation for FSHD dinner and dance fundraiser, Howard Beach, NY 2015 fundraising event
  • 2014 FSH Society 16th Annual "Friends Supporting Hope" fundraiser event, Boston College High School, Boston, MA
    Friends Supporting Hope Fundraiser 2014
  • 2014 FSH Society "A Festive Evening of Songs" fundraiser event featuring Steven Blier and Sylvia McNair, Tarrytown, NY
    Festive Evening of Songs Fundraiser 2014
  • 2014 FSHD Connect: The FSH Society's Biennial International Network Meeting for FSHD Patients, Clinicians and Researchers, Boston, MA
  • 2013 The Wellstone Program and UMMS-UMMHC FSH muscular dystrophy clinic opening, UMMS, Worcester, MA
  • 2013 FSH Society "Cape Cod Walk ‘n' Roll for FSHD fundraiser, Harwich, MA
  • 2013 FSH Society "A Festive Evening of Music and Song at New York Botanical Garden" fundraiser event featuring Steven Blier and Judy Kaye, Bronx, NY
  • 2013 Chris Carrino Foundation for FSHD fundraiser, Howard Beach New York
  • 2012 FSH Society "A Festive Evening of Music and Song at New York Botanical Garden" fundraiser event featuring Steven Blier and Kelly O'Hara, Bronx, NY
    Festive Evening of Songs Fundraiser 2012
  • 2012 FSH Society "Cape Cod Walk ‘n' Roll for FSHD fundraiser, Harwich, MA
  • 2011 FSH Society "Cape Cod Walk ‘n' Roll for FSHD" fundraiser, Harwich, MA
  • 2011 FSH Society "End-of-Tax-Season" fundraiser, Dorchester, MA
    End of Tax Season Fundraiser 2011

Community Education

  • Leal Elementary School, Urbana, IL afterschool science enrichment program
  • Osher Lifelong Learning Institute course "The new genetic information and your medical care"
  • Watertown Community Foundation