Mitochondrial Medicine 2017: Washington DC. Family Program Schedule

Transcription

1 SCHEDULE Mitochondrial Medicine 2017: Washington DC Wednesday, June 28, :00-6:00 pm Day on the Hill Registration Plaza Foyer 6:00-7:30 pm Day on the Hill Prep Plaza Foyer Cliff Gorski, UMDF and Holland & Knight Thursday, June 29, :30 am Continental Breakfast Terrace Room 7:30 am Buses Depart for Capitol Hill Main Lobby 4:00-9:00 pm Symposium Mitochondrial Family Mixer Reception Plaza I & II and LHON Community Connection All Patients/Families and LHON attendees will come together to enjoy an evening to network with each other prior to the start of the sessions. 6:00-8:00 pm 11th Annual Adult Gathering Plaza III Moderators: AACT Leadership 6:00-8:00 pm Teen/Young Adult Movie Night Birch Friday, June 30, :00 am Registration & Continental Breakfast Plaza Foyer 7:00 am LHON Sessions/Registration/Breakfast Magnolia Foyer 8:00-9:30 am Welcome Plaza East Speakers: Brent Fields, Chuck Mohan, Philip Yeske, PhD and Kara Strittmatter Late Breaking - Effects of Elamipretide in Adults with Primary Mitochondrial Myopathy: a Phase 2 Double-Blind, Randomized, Placebo-Controlled Crossover Trial Amel Karaa, MD Plaza East 8:00-8:30 am LHON - Welcome Magnolia Ballroom ALL LHON sessions are in the Magnolia Ballroom on the UPPER LOBBY LEVEL

2 8:30-9:30 am LHON & Mito Scientific Overview Magnolia Ballroom Nancy J. Newman, MD 9:30-10:30 am ALL What is Mitochondrial Disease and What to Expect (Mito Basics) Plaza East Amy Goldstein, MD 9:30-10:30 am LHON - Obtaining or Maintaining Employment with LHON Magnolia Ballroom Teresa Goddard, Lead Consultant, Job Accommodation Network & Billy Parker, Program Director, Employment Support Services, National Industries for the Blind 9:30-10:30 am ALL - Physical Medicine and the Mitochondrial Patient Beech Sarah (Sally) Evans, MD, FAAPMR, FAAP 9:30-10:30 am Networking - The Many Faces of Grief - Special Sharing Time Birch Moderators: Kristi Strawser and Heather Schichtel 10:30-11:00am Break - Plaza Foyer and Magnolia Foyer 11:00 am-noon ALL Exercise and the Mitochondrial Disease Patient Plaza East Mark Tarnopolsky, MD, PhD, FRCP(C) 11:00 am-noon LHON Living with LHON - Panel Magnolia Ballroom Moderator: Maria Johnson 11:00 am-noon CHILD - Palliative Care and You: Be Not Afraid Beech Sarah Friebert, MD 11:00 am-noon Networking Room Session: Adult Patient Mentoring Workshop Birch 4-6 tables with topics - each table will have a moderator/leader for the specific topic and patients will engage in informal round table discussions. Noon-1:30 Geographic Lunch - Terrace Room/ Garden Patio LHON Lunch - Magnolia Foyer 1:30-2:30 pm ALL Transition to Adulthood: What Happens after High School for Plaza East Students with Disabilities? When Should Families Start Thinking about and Planning for Adult Life? Diane Monnig, ARC of Northern VA with Anne Tucillo, Parent Perspective 1:30-2:00 pm LHON Non-Vision Symptoms & LHON Magnolia Ballroom Amel Karaa, MD

3 2:00-2:30 pm LHON Genetics - Testing, Counseling & Communicating Magnolia Ballroom Brianne Kirkpatrick, MS, LGC 1:30-2:30 pm ADULT Ask the Mito Doc Panel Beech Moderator: UMDF Staff Panel Speakers: Greg Enns, MD, Andrea Gropman, MD, Austin Larson, MD, Zarazuela Zolkipli Cunningham, MBChB, MRCP, and Sirisak Chanprasert, MD 1:30-2:30 pm Leigh Syndrome Family Gathering Birch 2:30-3:00 pm Break - Plaza Foyer and Magnolia Foyer 3:00-4:00 pm LHON Practical Strategies to Enhance Independence Magnolia Ballroom Terena Scott, Certified Orientation and Mobility Specialist 3:00-4:30 pm ALL Cannabis and the U.S. Mitochondrial Community - Panel Plaza East Speakers: Russell Saneto, DO, PhD; Patrick Nightingale, Esq; and Sebastien Cotte 3:00-4:00 pm ADULT CPEO Exploring Signs, Symptoms, and Treatments Beech Zarazuela Zolkipli Cunningham, MBChB MRCP and Rustum Karanjia, MD, PhD 4:00-4:30 pm LHON Vision Loss-Related Resources Magnolia Ballroom Maria Johnson 4:30-5:00 pm LHON LHON Community Update Magnolia Ballroom Lissa Poincenot 6:00 pm Reception Plaza Foyer 7:00 pm Banquet Celebration - Awards Ceremony Plaza Ballroom Keynote: Christopher P. Austin, MD Director, National Center for Advancing Translational Sciences, National Institutes of Health

4 Saturday, July 1, :30 am Continental Breakfast Plaza Foyer 8:00 am UMDF National Updates, Roadmap to a Cure Plaza West Moderator: Philip Yeske, PhD, UMDF Science and Alliance Officer Clinical Trials for Mitochondrial Disease - Updates Plaza West 8:30 am Update from BioElectron Matthew Klein, BioElectron Technology Corporation (formerly Edison Pharmaceuticals) 8:55 am Stealth BioTherapeutics Update Reenie McCarthy, Stealth BioTherapeutics 9:20 am Rationale and Design of a Clinical Study of Omaveloxolone in Patients with Mitochondrial Myopathies Edmund Doherty, Reata Pharmaceuticals 9:40 am LEROS - a long term, multicenter, open-label clinical study using idebenone in LHON Xavier Lloria, Santhera Pharmaceuticals 10:00 am Coffee Break 10:30 am Open Clinical Studies (Non CME) Kris Engelstad, NAMDC and Columbia University 9:00-10:00 am Practical Strategies to Enhance Independence Aspen Terena Scott, Certified Orientation and Mobility Specialist 9:00-10:00 am ALL - Advocating for Yourself and/or Your Child within the Plaza East Complex Medical System Colleen Muraresku Clarke, CGC; Grace Smith, LMSW; MaryBeth Hollinger, RN, MSN; and Elizabeth McCormick, CGC 10:00 am Break Plaza Foyer

5 10:30-11:30 am Patient Advocacy - on Federal and Local Levels Elm Cliff Gorski 10:30-11:30 am ALL - Neurological Manifestations in the Mitochondrial Disease Patient Plaza East Andrea Gropman, MD 10:30-11:30 am ADULT - Palliative Care and You: Be Not Afraid Beech Sarah Friebert, MD 12:00 pm-1:30 pm Lunch Terrace Room / Garden Patio 1:30-2:30 pm CHILD Ask the Mito Doc Panel Plaza East Moderator: UMDF Staff Panel Speakers: Richard Boles, MD, Sirisak Chanprasert, MD; Mary Kay Koenig, MD; and Samantha Marin, MD 1:30-2:30 pm ADULT - Endocrine Involvement in Mitochondrial Disease Beech Shana McCormack, MD 2:30-3:00 pm Break Plaza Foyer 3:00-4:30 pm Closing Session with Scientific Summary: What s on the Horizon! Plaza East Moderator: Chuck Mohan, UMDF CEO Day One: Amy Goldstein, MD Day Two: Russ Saneto, DO, PhD Day Three: Amel Karaa, MD 4:30 pm Adjourn