2018 FSHD Family Day, Rochester

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Date(s) - Saturday, April 7, 2018
9:00 am - 2:45 pm

University of Rochester Medical Center, Helen Wood Hall


Helen Wood Hall

Conference speakers will discuss exercise and rehabilitation, and review where we are in terms of therapeutic development and potential treatment. Presenters include Katy Eichinger, Jeff Statland, Stephen Tapscott, Rabi Tawil, and Silvere van der Maarel. Leann Lewis, Fields Center study coordinator and a certified genetics counselor, will discuss genetic testing, inheritance patterns, when or whether to test unaffected children and prenatal testing. June Kinoshita from the FSH Society will discuss the why it is important for patients and families to be engaged in regular clinical care and research. The meeting will end with a patient round table discussion.


  • Rabi Tawil, MD, Director, Fields Center for FSHD & Neuromusuclar Research, University of Rochester Medical Center, Rochester, NY
  • Jeffrey Statland, MD, Assistant Professor, Kansas University Medical Center, Kansas City, KS
  • Stephen Tapscott, MD, PhD, Professor of Neurology, University of Washington and the Hutchinson Cancer Research Center, Seattle, WA
  • Silvere van der Maarel, PhD, Leiden University Medical Center, The Netherlands
  • Katy Eichinger, P.T., PhD, Senior Instructor in Neurology, University of Rochester Medical Center, Rochester, NY
  • June Kinoshita, FSH Society, Boston, MA
  • Leann Lewis, MS, Research Project Coordinator, University of Rochester Medical Center, Rochester, NY

Patient & Family Member Panel: Round Table Discussion and Q&A session featuring insights from Patients and Family Members

Click here to view the invitation

Parking: The Saunders Research Building visitor parking lot is reserved for the FSHD Family Day Meeting.  A Parking Attendant will be in the booth to help assist with guests getting in and out of the parking lot.  Please let the parking attendant know that you are attending the FSHD Family Day and you will also see a sign for the FSHD Family Day Parking.  We will be providing free parking passes that you will receive at the registration table the morning of the meeting. 

Hotel Information: RIT Inn & Conference Center
Address: 5257 West Henrietta Road, Henrietta, NY 14467
Hotel rooms are limited. To reserve a hotel room, please contact Strong Guest Services at 585-275-7581, ask to speak with Lu Sansone, and indicate that you will be attending the FSHD Patient Day Meeting. The cost for the room will be $40 + tax.
Note: If someone contacts the RIT Inn & Conference Center directly they will not get the discount rate, so they will need to contact Guest Services.
*Hotel offers shuttle service*