33rd Annual Family Conference Disney 2019
 
12/19/2019
8:00 am - 12:00 pmPoinsettia/QuinceBoard of Directors Meeting
10:00 am - 1:00 pmHotel LobbyAdults with MPS & ML Meet and Greet
12:00 pm - 6:00 pmEast RegistrationRegistration
12:30 pmSalon I-IVCamp Courage Opens
1:00 pm - 1:10 pmInternational BallroomWelcome Presentation [More Info]
Moderator: Lisa Todd, MPS II Parent, Chairman of the Board, National MPS Society
1:00 pm - 4:30 pmSalon VPhotographer
1:00 pm - 10:00 pmGrand FoyerReflection Area
 
 
International BallroomSession 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 pmInternational BallroomThe Importance of Advocacy [More Info]
Isabel Bueso, MPS VI Patient
1:25 pm - 1:40 pmInternational BallroomDeveloping Individualized Therapies for an Unmet Need from a Patient Scientist [More Info]
Jennifer Klein MS, Scientist, ML III Patient
1:40 pm - 1:45 pmInternational BallroomPanel Questions [More Info]
Isabel Bueso, MPS VI Patient
Jennifer Klein MS, Scientist, ML III Patient
 
 
International BallroomSession 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 pmInternational BallroomOverview of the Mucopolysaccharidoses with a Science Twist [More Info]
Lorne Clarke MD, CM, FRCPC, FCCMG, University of British Columbia
2:15 pm - 3:00 pmInternational BallroomGene Therapy/Gene Editing Today and Our Future [More Info]
Matthew Ellinwood DVM, PhD, Iowa State University
3:00 pm - 3:30 pmInternational BallroomNewborn Screening for MPS Disorders: What is It? The Role of Advocacy [More Info]
Barbara Burton MD, Northwestern University
3:30 pm - 4:00 pmInternational BallroomNeurocognitive Manifestations and Considerations in MPS [More Info]
Julie Eisengart PhD, LP, University of Minnesota
4:00 pm - 4:10 pmInternational BallroomPanel 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 pmInternational BallroomMPS Research Pipeline and National MPS Society Research Program [More Info]
Matthew Ellinwood DVM, PhD, Iowa State University
4:20 pm - 4:30 pmInternational Ballroom2020 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 pmPalm I-IIWelcome Buffet Dinner
4:30 pm - 6:00 pmPalm VNewly 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 pmSalon I-IVCamp Courage Closes
5:15 pm - 6:15 pmPalm FoyerDisney Character Meet and Greet
6:15 pmSalon I-IVCamp Courage Opens
 
 
Multiple LocationsSession 3: Breakout Sessions
 
12/19/2019
6:30 pm - 8:00 pmNarcissus/Orange BlossomMPS 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 pmSalon VIIMPS II [More Info]
Kris Klenke, MPS II Parent, Board of Directors, National MPS Society
Melissa Hogan, MPS II Parent
6:30 pm - 8:00 pmSalon VIMPS III [More Info]
Angela Guajardo, MPS III Parent
6:30 pm - 8:00 pmPoinsettia/QuinceMPS 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 pmMagnoliaMPS VI [More Info]
Patricia Espinal, MPS VI Patient
6:30 pm - 8:00 pmLilyMPS VII [More Info]
Leslie Urdaneta, Family Support Coordinator, National MPS Society
6:30 pm - 8:00 pmKahiliML [More Info]
Jennifer Klein MS, Scientist, ML III Patient
6:30 pm - 9:30 pmSalon VIIISibling Breakout Session [More Info]
Chelsey Klenke, MSW, MPS II Sibling
Helen Kirch, MPS III Sibling
8:15 pmJohn T'sAdults 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 pmSalon VIMothers [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 pmSalon VIIFathers [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 pmSalon VIIISiblings [More Info]
Helen Kirch, MPS III Sibling
Chelsey Klenke, MSW, MPS II Sibling
8:15 pm - 9:30 pmNarcissus/Orange BlossomGrandparents
9:40 pmSalon I-IVCamp Courage Closes
 
12/20/2019
6:30 am - 7:45 amGrand FoyerGrab and Go Breakfast and Board Buses
7:00 am - 11:00 amFalcon's Fire Golf ClubDisney Picnic Lunch
7:00 am - 11:00 amFalcon's Fire Golf Club5K Chip Timed Run
7:00 am - 11:00 amFalcon's Fire Golf ClubMemorial Walk
11:45 amSalon I-IVCamp Courage Opens
12:00 pm - 3:00 pmSalon VPhotographer
 
 
International BallroomSession 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 pmInternational BallroomWhat’s New with the Heart in MPS and ML? [More Info]
Elizabeth Braunlin MD, PhD, University of Minnesota
12:30 pm - 1:20 pmInternational BallroomOrthopedic 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 pmInternational BallroomPanel 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 pmInternational BallroomThe Role of Transplant/Gene Therapy in MPS Disorders [More Info]
Paul Orchard MD, University of Minnesota
2:00 pm - 2:20 pmInternational BallroomCorneal Transplants for MPS Patients [More Info]
Roberto Pineda II, MD, Massachusetts General Hospital
2:15 pm - 3:15 pmGrand FoyerHealth Break (runs concurrently)
2:20 pm - 2:25 pmInternational BallroomPanel Questions [More Info]
Paul Orchard MD, University of Minnesota
Roberto Pineda II, MD, Massachusetts General Hospital
 
 
International BallroomSession 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 pmInternational BallroomNavigating Complexities of Clinical Trials [More Info]
Chester Whitley PhD, MD, University of Minnesota
2:50 pm - 3:00 pmInternational BallroomREGENXBIO
3:00 pm - 3:10 pmInternational BallroomTakeda Pharmaceuticals
3:10 pm - 3:20 pmInternational BallroomSanofi Genzyme
3:20 pm - 3:30 pmInternational BallroomUltragenyx Pharmaceuticals
3:30 pm - 3:40 pmInternational BallroomBioMarin and Allievex
3:40 pm - 3:50 pmInternational BallroomAbeona Therapeutics
3:50 pm - 4:00 pmInternational BallroomLYSOGENE and Sarepta Therapeutics
 
 
No locationSession 6: Concurrent Sessions
 
12/20/2019
4:00 pm - 4:45 pmSalon VIParticipation in Clinical Trials: What's It All About? [More Info]
Steve Smith, MS, MPS Parent
4:00 pm - 4:45 pmSalon VIIGenetic Testing/Family Planning [More Info]
Barbara Burton MD, Northwestern University
4:00 pm - 4:45 pmPalm IIIThe 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 pmSalon VCBD Oil and Benefits [More Info]
Mojan Zehtabichi ND
4:00 pm - 4:45 pmSalon VIIIHolistic Care for Your Family [More Info]
Sharyn Madison MS, SCT, Courtland Reiki
4:00 pm - 4:45 pmPoinsettia/QuinceBereavement [More Info]
Kris Klenke, MPS II Parent, Board of Directors, National MPS Society
4:45 pm - 5:30 pmSalon VIParticipation in Clinical Trials: What's It All About? [More Info]
Steve Smith, MS, MPS Parent
4:45 pm - 5:30 pmPoinsettia/QuinceBereavement [More Info]
Kris Klenke, MPS II Parent, Board of Directors, National MPS Society
4:45 pm - 5:30 pmPalm IIINavigating Medicaid and SSI [More Info]
Tom Wier, Social Security Administration
4:45 pm - 5:30 pmSalon VIIHabits of Emotionally Resilient People [More Info]
Nathalie Marie, MD
4:45 pm - 5:30 pmSalon VIIIHolistic Care for Your Family [More Info]
Sharyn Madison MS, SCT, Courtland Reiki
4:45 pm - 5:30 pmSalon VCBD Oil and Benefits [More Info]
Mojan Zehtabichi ND
5:30 pm - 5:45 pmPavillionRemembrance Ceremony
6:00 pmSalon I-IVCamp Courage Closes
6:30 pmInternational Ballroom45th Anniversary Banquet Celebration and Awards
6:30 pm - 8:30 pmGrand FoyerBanquet Photos
8:30 pmSplitsville Luxury LanesSibling Outing to Disney Springs (chaparoned)
 
12/21/2019
8:30 am - 3:45 pmSalon I-IISPIRIT Conference for adults with MPS and ML [More Info]
9:00 am - 9:30 amSalon I-IISPIRIT Conference Welcome [More Info]
Seth Rotberg, Our Odyssey
9:30 am - 10:30 amSalon I-IIWorking and SSI, Medicaid [More Info]
Tom Wier, Social Security Administration
10:30 am - 12:00 pmSalon I-IIUnderstanding 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 pmSalon IIINetworking Lunch
1:00 pm - 1:45 pmSalon I-IILiving 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 pmSalon I-IINavigating Work and Internships, Transitioning from College to Career [More Info]
Seth Rotberg, Our Odyssey
2:30 pm - 3:15 pmSalon I-IICBD Oils and its Benefits [More Info]
Mojan Zehtabichi ND
3:00 pm - 3:45 pmSalon I-IIPlant-Based and Anti-Inflammatory Diets [More Info]
Mojan Zehtabichi ND