33rd Annual Family Conference Disney 2019
 
12/19/2019
8:00 am - 12:00 pmBoard of Directors Meeting
10:00 am - 1:00 pmAdults with MPS & ML Meet and Greet
12:00 pm - 6:00 pmRegistration
12:30 pmCamp Courage Opens
1:00 pm - 4:30 pmPhotographer
1:00 pm - 10:00 pmReflection Area
1:00 pm - 1:10 pmWelcome Presentation
Lisa Todd, MPS II Parent, Chairman of the Board, National MPS Society
 
 
Session 1: Keynote Speakers - A Spectrum of Diseases Trialing and Seeking Research
Lisa Todd, MPS II Parent, Chairman of the Board, National MPS Society
 
12/19/2019
1:10 pm - 1:25 pmLiving in the United States - My Life-Saving Treatment
Isabel Bueso, MPS VI Patient
1:25 pm - 1:40 pmSeeking Science to Cure Mucolipidosis - Patient Testimony for an Unmet Need
Jennifer Klein MS, Scientist, Collaborations Pharma
1:40 pm - 1:45 pmPanel Questions
Isabel Bueso, MPS VI Patient
Jennifer Klein MS, Scientist, Collaborations Pharma
 
 
Session 2: Disease Overview, Emerging Therapies, Answering Today's Complex Questions
Steve Holland, MPS I Parent, Vice Chairman of the Board
 
12/19/2019
1:45 pm - 2:15 pmPlenary Session - Overview of the Mucopolysaccharidoses with a Science Twist
Lorne Clarke MD, CM, FRCPC, FCCMG, University of British Columbia
2:15 pm - 3:00 pmGene Therapy/Gene Editing Today and Our Future
Matthew Ellinwood DVM, PhD, Iowa State University
3:00 pm - 3:30 pmNewborn Screening for MPS Disorders: What is It? The Role of Advocacy
Barbara Burton PhD, Northwestern University
3:30 pm - 4:00 pmNeurocognitive Manifestations and Considerations in MPS
Julie Eisengart PhD, LP, University of Minnesota
4:00 pm - 4:10 pmPanel Questions
Lorne Clarke MD, CM, FRCPC, FCCMG, University of British Columbia
Matthew Ellinwood DVM, PhD, Iowa State University
Barbara Burton PhD, Northwestern University
Julie Eisengart PhD, LP, University of Minnesota
4:10 pm - 4:20 pmMPS Research Pipeline and National MPS Society Research Program
Matthew Ellinwood DVM, PhD, Iowa State University
4:20 pm - 4:30 pmResearch Grant Awardee Presentation
Lisa Todd, MPS II Parent, Chairman of the Board, National MPS Society
Terri Klein, President and CEO, National MPS Society
4:40 pmCamp Courage Closes
4:30 pm - 6:00 pmWelcome Buffet Dinner
4:30 pm - 6:00 pmNewly Diagnosed Family Dinner (diagnosed in the lst 12 months) Overview and Coping with MPS and ML
Joseph Muenzer MD, PhD, University of North Carolina Medical Genetics
Kendra Bjoraker PhD, L.P., 3:1 Neuropsychology Consultants
5:15 pm - 6:15 pmDisney Character Meet and Greet
6:15 pmCamp Courage Opens
6:30 pm - 8:00 pmMPS I
6:30 pm - 8:00 pmMPS II
Kris Klenke, MPS II Parent, Board of Directors
6:30 pm - 8:00 pmMPS III
6:30 pm - 8:00 pmMPS IV
Chris Tippett, MPS IV Parent, Board of Directors
Stephanie Bozarth, MPS IV Parent, Board of Directors
6:30 pm - 8:00 pmMPS VI
6:30 pm - 8:00 pmMPS VII
Leslie Urdaneta, Family Support Coordinator, National MPS Society
6:30 pm - 8:00 pmML
Jennifer Klein MS, Scientist, Collaborations Pharma
6:30 pm - 9:30 pmSibling Breakout Session
Chelsey Klenke, MPS II Sibling
Helen Kirch, MPS III Sibling
8:15 pmAdults with MPS and ML networking
Jason Madison, MPS II Patient, Board of Directors
Katelyn Blackman, Development and Program Coordinator, National MPS Society
8:15 pm - 9:30 pmMothers
Amy Holland, MPS I Parent, Board of Directors
Lisa Todd, MPS II Parent, Chairman of the Board, National MPS Society
Stephanie Bozarth, MPS IV Parent, Board of Directors
8:15 pm - 9:30 pmFathers
Austin Bozarth, MPS IV Parent, Board of Directors
Steve Holland, MPS I Parent, Vice Chairman of the Board
8:15 pm - 9:30 pmSiblings
8:15 pm - 9:30 pmGrandparents
9:40 pmCamp Courage Closes
 
12/20/2019
6:30 am - 7:45 amGrab and Go Breakfast and Board Buses
7:00 am - 11:00 am5K Chip Timed Run
7:00 am - 11:00 amMemorial Walk
7:00 am - 11:00 amDisney Picnic Lunch
11:45 amCamp Courage Opens
12:15 pm - 3:00 pmPhotographer
 
 
Session 3: Treatment Options/Management of MPS Today - New Discoveries
Lisa Todd, MPS II Parent, Chairman of the Board, National MPS Society
 
12/20/2019
12:00 pm - 12:30 pmWhat’s New with the Heart in MPS and ML?
Elizabeth Braunlin MD, PhD, University of Minnesota
12:30 pm - 1:20 pmOrthopedic Manifestations in Patients with MPS
Klane White MD, MSc, Seattle Children's Hospital
Lynda Polgreen MD, MS, Harbor-UCLA Medical Center
1:20 pm - 1:30 pmPanel Questions
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 pmThe Role of Transplant/Gene Therapy in MPS Disorders
Paul Orchard MD, University of Minnesota
2:00 pm - 2:20 pmCorneal Transplants for MPS Patients
Roberto Pineda II, MD, Massachusetts General Hospital
2:20 pm - 2:25 pmPanel Questions
Paul Orchard MD, University of Minnesota
Roberto Pineda II, MD, Massachusetts General Hospital
2:30 pm - 2:50 pmNavigating Complexities of Clinical Trials
Chester Whitley PhD, MD, University of Minnesota
2:15 pm - 3:15 pmHealth Break (runs concurrently)
 
 
Session 4: Treatment and Clinical Trial Updates - Industry
Terri Klein, President and CEO, National MPS Society
 
12/20/2019
2:50 pm - 4:00 pmTreatment and Clinical Trial Updates - Industry (10 minutes each)
Terri Klein, President and CEO, National MPS Society
2:50 pm - 3:00 pmREGENXBIO
3:00 pm - 3:10 pmTAKEDA
3:10 pm - 3:20 pmSANOFI GENZYME
3:20 pm - 3:30 pmULTRAGENYX
3:30 pm - 3:40 pmBIOMARIN
3:40 pm - 3:50 pmABEONA
3:50 pm - 4:00 pmComing Soon
 
 
Session 5 - Concurrent Sessions
 
12/20/2019
4:00 pm - 4:45 pmHow Families Participate in Clinical Trials/Emotional Familial Responses
Stephen Smith
4:00 pm - 4:45 pmHabits of Emotionally Resilient People
Nathalie Marie, PhD
4:00 pm - 4:45 pmThe B.L.A.I.R. Connection
Grey Chapin, MPS III Sibling, The B.L.A.I.R. Connection
4:00 pm - 4:45 pmCBD Oil and Benefits
Mojan Zehtabichi ND
4:00 pm - 4:45 pmHolistic Care for Your Family
Sharyn Madison MS, SCT, Courtland Reiki
4:00 pm - 4:45 pmBereavement
Kris Klenke, MPS II Parent, Board of Directors
4:45 pm - 5:30 pmHow Families Participate in Clinical Trials/Emotional Familial Responses
Stephen Smith
4:45 pm - 5:30 pmBereavement
Kris Klenke, MPS II Parent, Board of Directors
4:45 pm - 5:30 pmNavigating SSI and Medicaid
Tom Wier, Social Security Administration
4:45 pm - 5:30 pmGenetic Testing/Family Planning
Barbara Burton PhD, Northwestern University
4:45 pm - 5:30 pmHolistic Care for Your Family
Sharyn Madison MS, SCT, Courtland Reiki
4:45 pm - 5:30 pmCBD Oil and Benefits
Mojan Zehtabichi ND
5:30 pm - 5:45 pmRemembrance Ceremony
5:35 pmCamp Courage Closes
6:30 pm45th Anniversary Banquet Celebration and Awards
6:30 pm - 8:30 pmBanquet Photos
8:30 pmSibling Outing to Disney Springs (chaparoned)
 
12/21/2019
8:30 am - 3:00 pmSPIRIT Conference for adults with MPS and ML