Program. Welcome! Dear Friends,

Transcription

1 Program Welcome! 2012 FSH Society International Patient and Researcher Network Meeting Saturday, June 30 and Sunday, July 1, 2012 Atlanta Marriott Marquis 265 Peachtree Center Avenue NE, Atlanta, GA USA Dear Friends, Thank you for joining fellow members of the FSH Society, FSHD patients, and families for the 12th biennial International Patient and Researcher Network Meeting. We invite you to join in partnership with this community, to learn about advances in treatment and research, and to make new friends. Sincerely, William R. Lewis, Sr., M.D. Chairman, Board of Directors FSH Society, Inc. Daniel Paul Perez President & CEO FSH Society, Inc. Program version June 15, 2012

2 Friday, June 29, :00 pm - 6:00 pm Registration [location: Atrium Registration Booth] 6:30 pm Informal dinner(s), to be arranged (optional) Saturday, June 30 8:00 am -- Coffee, tea, juice and iced-tea available in Atrium Ballroom A703/704 8:00 am Registration continues [location: Atrium Registration Booth] 9:00 am - noon Speakers followed by panel discussion [location: Atrium Ballroom A703/704] FSHD researchers speak and answer questions on the state of FSHD research and what patients might expect in the decade Stephen J. Tapscott, M.D., Ph.D. Fred Hutchinson Cancer Research Center, Seattle, Washington Michael Kyba, Ph.D. Lillehei Heart Institute and Department of Pediatrics University of Minnesota, Minneapolis, Minnesota Charles P. Emerson, Jr., Ph.D. Senator Paul D. Wellstone Muscular Dystrophy Cooperative Research Center for FSHD, & Program in Regenerative Biology, Boston Biomedical Research Institute, Watertown, Massachusetts Davide Gabellini, Ph.D. Division of Regenerative Medicine, Stem Cells, and Gene Therapy Dulbecco Telethon Institute at San Raffaele Scientific Institute, Milano, Italy Panel discussion, dialogue and Q&A on FSHD research [Atrium Ballroom] Noon Lunch (included in registration) [location: Atrium Ballroom] FSH Society Development Committee: Developing our vision for increasing financial resources 2:00 pm - 3:30 pm Concurrent sessions [location: Atrium rooms ] Getting to know each other: Introducing ourselves 1. FSHD adults (Ann Biggs-Williams, Roman Greene) A Spouses, partners and friends of FSHD adults (Ida Laurello, Bill Lewis) A Teenagers and young adults (Stephanie O Meara, Kevin Bache) A Parents of teenagers and young adults (Barbara and Jeffrey Bache) A Brothers and sisters of FSHD patients (Fred Thys) A Parents of infantile-fshd & early-onset FSHD patients (Lynn O Meara) A704 3:30 pm - 4:00 pm Break 2

3 4:00 pm - 5:00 pm Mindful yoga, relaxation and other integrative health practices [location: Atrium Ballroom] Dennis Buttimer, M.Ed., CEAP, RYT Buttimer and Associates, Atlanta, Georgia Dinner on your own Sunday, July 1 8:00 am -- Coffee, tea, juice and iced-tea available in Atrium Ballroom 9:00 am - 10:50 am Speakers followed by panel discussion [location: Atrium Ballroom] FSHD clinicians and therapists speak and answer questions on the clinical aspects of FSHD and improving the quality of patient living 9:00 am Improving clinical knowledge and understanding of FSHD Katherine D. Mathews, M.D. Division of Neurology, Development and Behavior, University of Iowa Children's Hospital, Iowa City, Iowa 9:25 am Panel: Clinicians with three differently-affected patients speak about how FSHD has affected their lives 10:00 am Considering clinical trials in muscle disease: an industry perspective Fady I. Malik, M.D., Ph.D., FACC Muscle Biology and Therapeutics Cytokinetics, Inc., South San Francisco, California 10:25 am Advances in clinical research and translational research Kathryn Wagner, M.D., Ph.D. The Center for Genetic Muscle Disorders, Kennedy Krieger Institute, and, Johns Hopkins School of Medicine, Baltimore, Maryland USA 10:50 am - 11:00 am Break 11:00 am - Noon FSHD clinicians and therapists speak and answer questions on the clinical aspects of FSHD and improving the quality of patient living (continued) [location: Atrium Ballroom] Physical therapy and exercise Shree Pandya, PT, DPT, M.S. Department of Neurology University of Rochester Medical Center, Rochester, New York Breathing and respiratory health Louis J. Boitano, M.S., RRT, RPFT Respiratory Care Practitioner, Pulmonary Medicine Specialty Clinic University of Washington, Seattle, Washington 3

4 Noon Luncheon Panel Lunch (included in registration) [location: Atrium Ballroom] Psychological, spiritual and social dimensions of FSHD Led by Carol Birnbaum, M.D., Cambridge, Massachusetts [location: Atrium Ballroom] 1:30 pm 2:30 pm Small breakout discussion sessions and 3:00 4:00 pm First Group [location: Atrium rooms ] 1:30 pm 1. Nutrition 101: Evaluating nutritional claims (Carol Chandler, Val Renosto) A706 2:30 pm 2. The expert patient: managing dialogue with your physician (Don Burke, Dr. Wagner) A Addressing physical challenges with assistive technology (Barb Williams, Kevin Kirby) A Monitoring and supporting your respiratory health (Louis Boitano) A Understanding early onset and infantile FSHD (Katherine Mathews) A Deciding to have children (Carol Birnbaum) A Increasing philanthropy for FSHD research (Development Committee) A704 Second Group [location: Atrium rooms ] 3:00 pm 1. Leisure time and the freedom to travel (Cyndi Segroves, Ray Jordan) A706 4:00 pm 2. Taking stock of your future in the workplace (Chris Stenmon, Chris Carrino) A Questions and Answers with the Researchers (Kathryn Wagner, Katherine Mathews, Louie Boitano, Tracy Zhang, Hiroaki Mitsuhashi) A Caregivers: sharing triumphs and trials (Judy Lokerson, Jim Chin) A Parents: preparing for the education and work life of your children (Barbara and Jeffrey Bache, and Kevin Bache) A Teenagers and young adults: dating and forming lifelong relationships (Ben Brittain, Valerie Renosto) A Adults of any age: dating and finding relationships (Mimi Brown, Bill Burns) A704 4:00 pm Meeting concludes: adjourning remarks [location: Atrium Ballroom] Photography: Staff and participants will be taking photos during the meetings for use in FSH Society print and electronic publications. If you do not wish a photo of yourself to be used in this manner, please move out of the picture and/or give one of the Society s staff a written note with this instruction. FSH Society, Inc., 64 Grove Street, Watertown, MA (617) ,

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6 Sponsors of the Atlanta 2012 Patient-Researcher Network Meeting are: 6