12/19/2019 | |||
8:00 am - 12:00 pm | Poinsettia/Quince | Board of Directors Meeting | |
10:00 am - 1:00 pm | Hotel Lobby | Adults with MPS & ML Meet and Greet | |
12:00 pm - 6:00 pm | East Registration | Registration | |
12:30 pm | Salon I-IV | Camp Courage Opens | |
1:00 pm - 1:10 pm | International Ballroom | Welcome Presentation [More Info] Moderator: Lisa Todd, MPS II Parent, Chairman of the Board, National MPS Society | |
1:00 pm - 4:30 pm | Salon V | Photographer | |
1:00 pm - 10:00 pm | Grand Foyer | Reflection Area | |
International Ballroom | Session 1: Keynote Speakers - A Spectrum of Diseases Trialing and Seeking Research [More Info] Moderator: Lisa Todd, MPS II Parent, Chairman of the Board, National MPS Society | ||
12/19/2019 | |||
1:10 pm - 1:25 pm | International Ballroom | The Importance of Advocacy [More Info] Isabel Bueso, MPS VI Patient | |
1:25 pm - 1:40 pm | International Ballroom | Developing Individualized Therapies for an Unmet Need from a Patient Scientist [More Info] Jennifer Klein MS, Scientist, ML III Patient | |
1:40 pm - 1:45 pm | International Ballroom | Panel Questions [More Info] Isabel Bueso, MPS VI Patient Jennifer Klein MS, Scientist, ML III Patient | |
International Ballroom | Session 2: Disease Overview, Emerging Therapies, Answering Today's Complex Questions [More Info] Moderator: Steve Holland, MPS I Parent, Vice Chairman of the Board, National MPS Society | ||
12/19/2019 | |||
1:45 pm - 2:15 pm | International Ballroom | Overview of the Mucopolysaccharidoses with a Science Twist [More Info] Lorne Clarke MD, CM, FRCPC, FCCMG, University of British Columbia | |
2:15 pm - 3:00 pm | International Ballroom | Gene Therapy/Gene Editing Today and Our Future [More Info] Matthew Ellinwood DVM, PhD, Iowa State University | |
3:00 pm - 3:30 pm | International Ballroom | Newborn Screening for MPS Disorders: What is It? The Role of Advocacy [More Info] Barbara Burton MD, Northwestern University | |
3:30 pm - 4:00 pm | International Ballroom | Neurocognitive Manifestations and Considerations in MPS [More Info] Julie Eisengart PhD, LP, University of Minnesota | |
4:00 pm - 4:10 pm | International Ballroom | Panel Questions [More Info] Lorne Clarke MD, CM, FRCPC, FCCMG, University of British Columbia Matthew Ellinwood DVM, PhD, Iowa State University Barbara Burton MD, Northwestern University Julie Eisengart PhD, LP, University of Minnesota | |
4:10 pm - 4:20 pm | International Ballroom | MPS Research Pipeline and National MPS Society Research Program [More Info] Matthew Ellinwood DVM, PhD, Iowa State University | |
4:20 pm - 4:30 pm | International Ballroom | 2020 Researcher Award Nomination Opens - CARE and SARE Awards [More Info] Moderator: Lisa Todd, MPS II Parent, Chairman of the Board, National MPS Society Moderator: Terri Klein, President and CEO, National MPS Society | |
4:30 pm - 6:00 pm | Palm I-II | Welcome Buffet Dinner | |
4:30 pm - 6:00 pm | Palm V | Newly Diagnosed Family Dinner (diagnosed in the lst 12 months) Overview and Coping with MPS and ML [More Info] Joseph Muenzer MD, PhD, University of North Carolina Medical Genetics Kendra Bjoraker PhD, L.P., 3:1 Neuropsychology Consultants | |
4:40 pm | Salon I-IV | Camp Courage Closes | |
5:15 pm - 6:15 pm | Palm Foyer | Disney Character Meet and Greet | |
6:15 pm | Salon I-IV | Camp Courage Opens | |
Multiple Locations | Session 3: Breakout Sessions | ||
12/19/2019 | |||
6:30 pm - 8:00 pm | Narcissus/Orange Blossom | Syndrome Breakout Sessions MPS I [More Info] Steve and Amy Holland, MPS I Parents, Board of Directors, National MPS Society Scott and Lynn Hopkins, MPS I Parents, Board of Directors, National MPS Society | |
6:30 pm - 8:00 pm | Salon VII | Syndrome Breakout Sessions MPS II [More Info] Kris Klenke, MPS II Parent, Board of Directors, National MPS Society Melissa Hogan, MPS II Parent | |
6:30 pm - 8:00 pm | Salon VI | Syndrome Breakout Sessions MPS III [More Info] Angela Guajardo, MPS III Parent | |
6:30 pm - 8:00 pm | Poinsettia/Quince | Syndrome Breakout Sessions MPS IV [More Info] Chris Tippett, MPS IV Parent, Board of Directors, National MPS Society Stephanie Bozarth, MPS IV Parent, Board of Directors, National MPS Society | |
6:30 pm - 8:00 pm | Magnolia | Syndrome Breakout Sessions MPS VI [More Info] Patricia Espinal, MPS VI Patient | |
6:30 pm - 8:00 pm | Lily | Syndrome Breakout Sessions MPS VII [More Info] Leslie Urdaneta, Family Support Coordinator, National MPS Society | |
6:30 pm - 8:00 pm | Kahili | Syndrome Breakout Sessions ML [More Info] Jennifer Klein MS, Scientist, ML III Patient | |
6:30 pm - 9:30 pm | Salon VIII | Sibling Breakout Session [More Info] Chelsey Klenke, MSW, MPS II Sibling Helen Kirch, MPS III Sibling | |
8:15 pm | John T's | Adults with MPS and ML networking [More Info] Jason Madison, MPS II Patient, Board of Directors, National MPS Society Katelyn Blackman, Development and Program Coordinator, National MPS Society | |
8:15 pm - 9:30 pm | Salon VI | Targeted Breakout Sessions Mothers [More Info] Amy Holland, MPS I Parent, Board of Directors, National MPS Society Moderator: Lisa Todd, MPS II Parent, Chairman of the Board, National MPS Society Stephanie Bozarth, MPS IV Parent, Board of Directors, National MPS Society | |
8:15 pm - 9:30 pm | Salon VII | Targeted Breakout Sessions Fathers [More Info] Austin Bozarth, MPS IV Parent, Board of Directors, National MPS Society Moderator: Steve Holland, MPS I Parent, Vice Chairman of the Board, National MPS Society | |
8:15 pm - 9:30 pm | Salon VIII | Targeted Breakout Sessions Siblings [More Info] Helen Kirch, MPS III Sibling Chelsey Klenke, MSW, MPS II Sibling | |
8:15 pm - 9:30 pm | Narcissus/Orange Blossom | Targeted Breakout Sessions Grandparents | |
9:40 pm | Salon I-IV | Camp Courage Closes | |
12/20/2019 | |||
6:30 am - 7:45 am | Grand Foyer | Destination Disney 5K Run and Memorial Walk Grab and Go Breakfast and Board Buses | |
7:00 am - 11:00 am | Falcon's Fire Golf Club | Destination Disney 5K Run and Memorial Walk Disney Picnic Lunch | |
7:00 am - 11:00 am | Falcon's Fire Golf Club | Destination Disney 5K Run and Memorial Walk 5K Chip Timed Run | |
7:00 am - 11:00 am | Falcon's Fire Golf Club | Destination Disney 5K Run and Memorial Walk Memorial Walk | |
11:45 am | Salon I-IV | Camp Courage Opens | |
12:00 pm - 3:00 pm | Salon V | Photographer | |
International Ballroom | Session 4: Treatment Options/Management of MPS Today - New Discoveries [More Info] Moderator: Lisa Todd, MPS II Parent, Chairman of the Board, National MPS Society | ||
12/20/2019 | |||
12:00 pm - 12:30 pm | International Ballroom | What’s New with the Heart in MPS and ML? [More Info] Elizabeth Braunlin MD, PhD, University of Minnesota | |
12:30 pm - 1:20 pm | International Ballroom | Orthopedic Manifestations in Patients with MPS [More Info] Klane White MD, MSc, Seattle Children's Hospital Lynda Polgreen MD, MS, Harbor-UCLA Medical Center | |
1:20 pm - 1:30 pm | International Ballroom | Panel Questions [More Info] Elizabeth Braunlin MD, PhD, University of Minnesota Klane White MD, MSc, Seattle Children's Hospital Lynda Polgreen MD, MS, Harbor-UCLA Medical Center | |
1:30 pm - 2:00 pm | International Ballroom | The Role of Transplant/Gene Therapy in MPS Disorders [More Info] Paul Orchard MD, University of Minnesota | |
2:00 pm - 2:20 pm | International Ballroom | Corneal Transplants for MPS Patients [More Info] Roberto Pineda II, MD, Massachusetts General Hospital | |
2:15 pm - 3:15 pm | Grand Foyer | Health Break (runs concurrently) | |
2:20 pm - 2:25 pm | International Ballroom | Panel Questions [More Info] Paul Orchard MD, University of Minnesota Roberto Pineda II, MD, Massachusetts General Hospital | |
International Ballroom | Session 5: Clinical Trial Navigation, Treatments and Industry Updates [More Info] Moderator: Terri Klein, President and CEO, National MPS Society | ||
12/20/2019 | |||
2:30 pm - 2:50 pm | International Ballroom | Navigating Complexities of Clinical Trials [More Info] Chester Whitley PhD, MD, University of Minnesota | |
2:50 pm - 3:00 pm | International Ballroom | REGENXBIO | |
3:00 pm - 3:10 pm | International Ballroom | Takeda Pharmaceuticals | |
3:10 pm - 3:20 pm | International Ballroom | Sanofi Genzyme | |
3:20 pm - 3:30 pm | International Ballroom | Ultragenyx Pharmaceuticals | |
3:30 pm - 3:40 pm | International Ballroom | BioMarin and Allievex | |
3:40 pm - 3:50 pm | International Ballroom | Abeona Therapeutics | |
3:50 pm - 4:00 pm | International Ballroom | LYSOGENE and Sarepta Therapeutics | |
No location | Session 6: Concurrent Sessions | ||
12/20/2019 | |||
4:00 pm - 4:45 pm | Salon VI | Concurrent Sessions (45 minute rotating sessions) Participation in Clinical Trials: What's It All About? [More Info] Steve Smith, MS, MPS Parent | |
4:00 pm - 4:45 pm | Salon VII | Concurrent Sessions (45 minute rotating sessions) Genetic Testing/Family Planning [More Info] Barbara Burton MD, Northwestern University | |
4:00 pm - 4:45 pm | Palm III | Concurrent Sessions (45 minute rotating sessions) The B.L.A.I.R. Connection [More Info] Grey Chapin, MPS III Sibling, The B.L.A.I.R. Connection | |
4:00 pm - 4:45 pm | Salon V | Concurrent Sessions (45 minute rotating sessions) CBD Oil and Benefits [More Info] Mojan Zehtabichi ND | |
4:00 pm - 4:45 pm | Salon VIII | Concurrent Sessions (45 minute rotating sessions) Holistic Care for Your Family [More Info] Sharyn Madison MS, SCT, Courtland Reiki | |
4:00 pm - 4:45 pm | Poinsettia/Quince | Concurrent Sessions (45 minute rotating sessions) Bereavement [More Info] Kris Klenke, MPS II Parent, Board of Directors, National MPS Society | |
4:45 pm - 5:30 pm | Salon VI | Concurrent Sessions (45 minute rotating sessions) Participation in Clinical Trials: What's It All About? [More Info] Steve Smith, MS, MPS Parent | |
4:45 pm - 5:30 pm | Poinsettia/Quince | Concurrent Sessions (45 minute rotating sessions) Bereavement [More Info] Kris Klenke, MPS II Parent, Board of Directors, National MPS Society | |
4:45 pm - 5:30 pm | Palm III | Concurrent Sessions (45 minute rotating sessions) Navigating Medicaid and SSI [More Info] Tom Wier, Social Security Administration | |
4:45 pm - 5:30 pm | Salon VII | Concurrent Sessions (45 minute rotating sessions) Habits of Emotionally Resilient People [More Info] Nathalie Marie, MD | |
4:45 pm - 5:30 pm | Salon VIII | Concurrent Sessions (45 minute rotating sessions) Holistic Care for Your Family [More Info] Sharyn Madison MS, SCT, Courtland Reiki | |
4:45 pm - 5:30 pm | Salon V | Concurrent Sessions (45 minute rotating sessions) CBD Oil and Benefits [More Info] Mojan Zehtabichi ND | |
5:30 pm - 5:45 pm | Pavillion | Remembrance Ceremony | |
6:00 pm | Salon I-IV | Camp Courage Closes | |
6:30 pm | International Ballroom | 45th Anniversary Banquet Celebration and Awards | |
6:30 pm - 8:30 pm | Grand Foyer | Banquet Photos | |
8:30 pm | Splitsville Luxury Lanes | Sibling Outing to Disney Springs (chaparoned) | |
12/21/2019 | |||
8:30 am - 3:45 pm | Salon I-II | SPIRIT Conference for adults with MPS and ML [More Info] | |
9:00 am - 9:30 am | Salon I-II | SPIRIT Conference Welcome [More Info] Seth Rotberg, Our Odyssey | |
9:30 am - 10:30 am | Salon I-II | Working and SSI, Medicaid [More Info] Tom Wier, Social Security Administration | |
10:30 am - 12:00 pm | Salon I-II | Understanding and Breaking Down the Psychosocial Barriers in Chronic Conditions [More Info] Kendra Bjoraker PhD, L.P., 3:1 Neuropsychology Consultants | |
12:00 pm - 1:00 pm | Salon III | Networking Lunch | |
1:00 pm - 1:45 pm | Salon I-II | Living Your Life with Purpose: Transitions as an Adult with a Rare Disease [More Info] Kendra Bjoraker PhD, L.P., 3:1 Neuropsychology Consultants | |
1:45 pm - 2:30 pm | Salon I-II | Navigating Work and Internships, Transitioning from College to Career [More Info] Seth Rotberg, Our Odyssey | |
2:30 pm - 3:15 pm | Salon I-II | CBD Oils and its Benefits [More Info] Mojan Zehtabichi ND | |
3:00 pm - 3:45 pm | Salon I-II | Plant-Based and Anti-Inflammatory Diets [More Info] Mojan Zehtabichi ND |