Tenth Cooley's Anemia Symposium

Sunday, October 18, 2015 - Thursday, October 22, 2015

Loews Chicago O'Hare Hotel

Presented By

Presented by the Cooley's Anemia Foundation and the New York Academy of Sciences

Since the Ninth Cooley's Anemia Symposium was held in 2009, all areas of thalassemia research have sustained major advances. The 2015 Symposium will bring together basic scientists, clinical investigators, and clinicians, for interactions and education. Areas of focus will include the biology of globin gene regulation and fetal hemoglobin induction; the evolving areas of stem cell transplant, gene therapy strategies, and gene editing; the biology of iron regulation and possible therapeutic interventions in the hepcidin regulatory system; and clinical issues in thalassemia treatment and imaging. Leading investigators, together with physicians involved in thalassemia care from around the world, will be featured speakers. Interactive poster sessions will allow trainees involved in all of these research areas to present their work.

Since the inaugural meeting jointly presented by the Cooley's Anemia Foundation and the Academy in 1964, this series of symposia convened at 5–6 year intervals has been the preeminent forum for convening the thalassemia research community, the pharmaceutical industry, and funding agencies dedicated to fighting this blood disorder, and the 2015 meeting will carry on this proud tradition.

Registration Pricing

	By 8/28/2015	After 8/28/2015	Onsite
Member	$490	$590	$650
Student/Postdoc Member	$300	$350	$400
Nonmember (Academia/Government)	$615	$715	$775
Nonmember (Corporate)	$850	$950	$1,050
Nonmember (Non-profit)	$615	$715	$775
Nonmember (Student/Postdoc/Fellow)	$325	$375	$425
Patient	$350	$350	$350
Day Rate	$350	$400	$425
Welcome Reception ONLY	$30	$30	$30
Farewell Luncheon ONLY	$18	$18	$18

Registration fee for the entire five-day symposium includes a complimentary, one-year individual membership to the New York Academy of Sciences. Complimentary memberships are provided to non-members only and cannot be used to renew or extend existing or expiring memberships. A welcome email will be sent upon registration, which will include your membership credentials.

Proceedings will be published as a volume of Annals of the New York Academy of Sciences. Registration fee for the entire five-day symposium includes one free copy of the symposium proceedings for this event.

Please note:

The Day Rate registration fee is available for participation on October 19, 20, or 21 only.
Patients are welcome to attend the entire five-day symposium for a flat registration fee of $350. For more information and to register, please contact Mary Woldegiorgis, Cooley's Anemia Foundation, at mwoldegiorgis@thalassemia.org or call 212.279.8090 Ext. 208.
Complimentary Membership and a free copy of the symposium proceedings are not included for Patient and Day Rate registration categories.

Image Credit: Wave of Hope, Wainwright Media Group.

Agenda

* Presentation titles and times are subject to change.

Day 1 — Sunday, October 18, 2015
5:00 PM	Registration Location: Artist Foyer
6:00 PM	Welcome Reception Location: Cassatt Ballroom
8:00 PM	Day 1 Adjourns
Day 2 — Monday, October 19, 2015
7:00 AM	Registration Location: Artist Foyer
7:00 AM	Breakfast Location: Cassatt Ballroom
8:40 AM	Welcome Remarks Location: Avedon Ballroom C/D Brooke Grindlinger, PhD, The New York Academy of Sciences Anthony J. Viola, BS, CPA, National President, Cooley’s Anemia Foundation Ellis J. Neufeld, MD, PhD, Dana-Farber/Children’s Cancer and Blood Disorders Center; Harvard Medical School
9:15 AM	Joint Session Science Keynote Address Stuart H. Orkin, MD, Boston Children’s Hospital and Dana-Farber Cancer Institute
9:45 AM	Keynote Address Q & A
10:10 AM	Networking Coffee Break
Joint Session I: Gene Therapy Location: Avedon Ballroom C/D Session Chair: Alexis A. Thompson, MD, MPH, Ann and Robert H. Lurie Children’s Hospital of Chicago, Northwestern University Feinberg School of Medicine
10:30 AM	Gene Therapy for Beta-Thalassemia Major. The Memorial Sloan Kettering Experience Farid Boulad, MD, Memorial Sloan Kettering Cancer Center
10:55 AM	Outcomes of Gene Therapy for β-Thalassemia Major via Transplantation of Autologous Hematopoietic Stem Cells Transduced ex vivo with a Lentiviral β^A-T87Q-Globin Vector Marina Cavazzana, MD, PhD, Hospital Necker, University Paris Descartes
11:20 AM	Toward a Gene Therapy Clinical Trial for the Treatment of Beta-Thalassemia Major at Cincinnati Children’s Hospital Medical Center Punam Malik, MD, Cincinnati Children’s Hospital
11:45 AM	Update on Gene Therapy Clinical Trial for the Treatment of Beta-Thalassemia Major in Italy Giuliana Ferrari, PhD, San Raffaele-Telethon Institute for Gene Therapy
12:10 PM	Networking Lunch Location: Cassatt Ballroom
Concurrent Session 2A: Gene Regulation 1 Location: Avedon Ballroom A/B Session Chair: Stephen A. Liebhaber, MD, Perelman School of Medicine at the University of Pennsylvania
1:30 PM	Understanding the Regulation of α-globin Gene Expression and its Implication for the Treatment of β-Thalassemia Douglas R. Higgs, MD, FRCP, FRS, University of Oxford, Weatherall Institute of Molecular Medicine
1:55 PM	Humanized Mouse Models of Cooley’s Anemia Thomas M. Ryan, PhD, The University of Alabama at Birmingham
2:20 PM	Modulation of the Pathways that Control HbF Synthesis Vijay Sankaran, MD, PhD, Boston Children’s Hospital and Dana-Farber Cancer Institute
2:45 PM	Long Range Enhancer Control of Beta-globin Genes Ann Dean, PhD, National Institutes of Health
Concurrent Session 2B: Clinical Management 1 Location: Avedon Ballroom C/D Session Chair: Elliott Vichinsky, MD, UCSF Benioff Children’s Hospital Oakland
1:30 PM	Nutrition for Patients with Thalassemia Ellen B. Fung, PhD, RD, UCSF Benioff Children’s Hospital Oakland
2:00 PM	An ‘Aging’ Population of Adults with Transfusion-dependent Thalassemia (TDT) John B. Porter, MD, University College London Hospitals
2:30 PM	Diagnostic Challenges: Carrier vs. Thalassemia Intermedia Antonio Piga, MD, Torino University
3:10 PM	Comfort Break
Concurrent Session 3A: Gene Regulation 2 Location: Avedon Ballroom A/B Session Chair: James Bieker, PhD, Mount Sinai School of Medicine
3:30 PM	Regulation of HbF Synthesis Swee Lay Thein, MD, National Institutes of Health
4:00 PM	CRISPR/Cas-enhanced Gene Replacement for Sickle Cell Disease Tim M. Townes, PhD, School of Medicine, The University of Alabama at Birmingham
4:30 PM	The LRF/ZBTB7A Transcription Factor Regulates BCL11A-independent Globin Switching Takahiro Maeda, MD, PhD, Brigham and Women’s Hospital
Concurrent Session 3B: Clinical Management 2 Location: Avedon Ballroom C/D Session Chair: Richard Ward, MD, Toronto General Hospital
3:30 PM	Diverse Hematological Phenotypes and Screening for β-Thalassemia Carriers David H. K. Chui, MD, Boston University School of Medicine
3:55 PM	Cardiac Complications in Thalassemia Dudley Pennell, MD, Imperial College London
4:20 PM	When to Transfuse in Patients with Non-transfusion–dependent Thalassemia (NTDT) Vip Viprakasit, MD, DPhil, Faculty of Medicine Siriraj Hospital, Mahidol University
4:45 PM	Assessment and Treatment of Pain in Thalassemia Ashutosh Lal, MD, UCSF Benioff Children’s Hospital Oakland
5:10 PM	Day 2 Adjourns
Day 3 — Tuesday, October 20, 2015
6:30 AM	Breakfast Location: Cassatt Ballroom
6:30 AM	Poster Session Set-up Location: Artist Foyer
Concurrent Breakfast Sessions
7:00 AM	SESSION A Location: Avedon Ballroom C/D
	Studies of Fetal Hemoglobin Regulation in Cultured Human Erythroblasts Jeffery L. Miller, MD, Molecular Medicine Branch, National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health
	New Insights of Ineffective Erythropoiesis in β-Thalassemia: Therapeutic Implications Olivier Hermine, MD, PhD, Hospital Necker, University Paris Descartes
7:00 AM	SESSION B Location: Cassatt Ballroom A/B
	Focus on Adherence: Facilitators and Barriers Kathleen Durst, MA, LCSW, Cooley’s Anemia Foundation
	Self-efficacy and Adherence with Iron Chelation Therapies: Motivational Interviewing Interventions Marsha J. Treadwell, PhD, UCSF Benioff Children’s Hospital Oakland
8:00 AM	Comfort Break
Joint Session: Clinical Keynote Location: Avedon Ballroom C/D
8:45 AM	Clinical Keynote Address: Clinical Features of Thalassemia Syndromes in 2015 Maria Domenica Cappellini, MD, FRCP, FACP, University of Milan, Ca Granda Foundation IRCCS
9:30 AM	Keynote Address Q & A
9:45 AM	Networking Coffee Break Location: Artist Foyer
Joint Session 4: Chelation Location: Avedon Ballroom C/D Session Chair: Alan R. Cohen, MD, The Children’s Hospital of Philadelphia
10:15 AM	How Do We Choose Target Iron Levels? Thomas D. Coates, MD, Childrens Hospital Los Angeles, University of Southern California Keck School of Medicine
10:45 AM	Evolving Concepts in Safety, Efficacy, and Side Effects of Iron Chelators Ellis J. Neufeld, MD, PhD, Dana-Farber/Boston Children’s Cancer and Blood Disorders Center; Harvard Medical School
11:15 AM	Current Recommendations for Chelation Therapy Janet L. Kwiatkowski, MD, MSCE, The Children’s Hospital of Philadelphia; Perelman School of Medicine, University of Pennsylvania
11:45 PM	Networking Lunch Location: Cassatt Ballroom
11:45 PM	Mentoring Lunch for Women, Underrepresented Minorities, and Early Career Investigators Location: Cassatt Ballroom Participants in the Mentoring Lunch are invited to join select Symposium speakers for an interactive, small group dialogue at tables marked “Reserved for Mentoring Lunch.”
Joint Session 5: Imaging Location: Avedon Ballroom C/D Session Chair: John C. Wood, MD, PhD, Children’s Hospital Los Angeles
1:20 PM	Imaging Assessment of Organs in Cooley’s Anemia with an Emphasis on MRI David Dinan, MD, Nemours Children’s Hospital
1:50 PM	Evolving MRI Techniques and Application to Iron Detection Scott B. Reeder, MD, PhD, University of Wisconsin School of Medicine and Public Health
2:20 PM	Expanding our Understanding of Organ Iron Overload — Evidence for Broader Use of MRI in Iron Detection John C. Wood, MD, PhD, Children’s Hospital Los Angeles
2:50 PM	Networking Coffee Break Location: Artist Foyer
Joint Session 6: Iron Regulation/Metabolism Location: Avedon Ballroom C/D Session Chair: Mark D. Fleming, MD, DPhil, Boston Children’s Hospital
3:10 PM	Iron-related Pathways Controlling Hepcidin Expression Jodie L. Babitt, MD, Massachusetts General Hospital
3:40 PM	Non-liver Regulation of Iron Metabolism: Kidney and Heart Jonathan M. Barasch, MD, PhD, Columbia University
4:10 PM	Clinical Disorders of Iron Metabolism: New Insights into Diseases of Hepcidin Dysregulation Mark D. Fleming, MD, DPhil, Boston Children’s Hospital
4:50 PM	Poster Session Location: Artist Foyer Authors stationed at posters from 5:00 PM–6:00 PM
6:30 PM	Day 3 Adjourns (Poster Session posters removed)
Day 4 — Wednesday, October 21, 2015
7:00 AM	Breakfast Location: Cassatt Ballroom
7:00 AM	Poster Session Set-up Location: Artist Foyer
Joint Breakfast Session Location: Avedon Ballroom C/D
7:30 AM	Special Clinical Focus: Morbidities in Non-transfusion–dependent Thalassemia (NTDT) Ali Taher, MD, PhD, FRCP, American University of Beirut Medical Center
8:30 AM	Comfort Break
Joint Session 7: Clinical Management 3 Location: Avedon Ballroom C/D Session Chair: Ashutosh Lal, MD, UCSF Benioff Children’s Hospital Oakland
9:00 AM	Iron Deficiency, Infection, Inflammation, and Hepcidin Regulation Hal Drakesmith, PhD, Weatherall Institute of Molecular Medicine, University of Oxford
9:25 AM	Age of Transfused Blood and Blood-borne Infections Eldad A. Hod, MD, Columbia University
9:50 AM	Management of Thalassemia-associated Osteoporosis Andrea Giusti, MD, Galliera Hospital
10:15 AM	Hepatitis C Treatment Advances Steven Flamm, MD, Northwestern Medical Center
10:40 AM	Nonmyeloablative Transplantation in Adults with Severe Sickle Cell Disease John F. Tisdale, MD, National Heart, Lung, and Blood Institute
11:05 AM	Networking Coffee Break Location: Artist Foyer
Joint Session: Best of Oral Poster Presentations Location: Avedon Ballroom C/D
11:30 AM	Clinical-scale Genome Editing of the Human BCL11A Erythroid Enhancer for Treatment of β-Thalassemia Fyodor D. Urnov, PhD, Sangamo BioSciences
11:45 AM	Amelioration of Murine Sickle Cell Disease by Non-Ablative Conditioning and Gamma-globin Gene–corrected Bone Marrow Cells Andrew Wilber, PhD, Southern Illinois University School of Medicine and Simmons Cancer Institute
12:00 PM	Rescue of Humanized Cooley’s Anemia Mice from Lethal Anemia by a Single Point Mutation in the ɣ-Globin Gene Promoter Suean Fontenard, BS, University of Alabama at Birmingham
Patient Presentation
12:15 PM	Pioneering Gene Therapy – A Patient’s Perspective Wanda Sihanath
12:30 PM	Networking Lunch Location: Cassatt Ballroom
12:30 PM	Poster Session Location: Artist Foyer Authors stationed at posters from 12:30 PM–1:30 PM
Joint Session 8: Transplant Location: Avedon Ballroom C/D Session Chair: Mark Walters, MD, UCSF Benioff Children’s Hospital Oakland
1:30 PM	Management of Iron Overload Before, During, and After Successful Transplantation Emanuele Angelucci, MD, Cancer Hospital “Armando Businco,” Cagliari
2:00 PM	Unrelated Donor Transplantation Using Reduced Intensity Conditioning in Children with Thalassemia Major Shalini Shenoy, MD, St. Louis Children’s Hospital
2:30 PM	Comfort Break
Joint Session 9: End Organ Damage Location: Avedon Ballroom C/D Session Chair: Suthat Fucharoen, MD, Mahidol University Salaya Campus; Thalassemia Research Center, Thailand Institute of Science and Technology
3:00 PM	Pulmonary Hypertension in Thalassemia Roberto F. Machado, MD, University of Illinois College of Medicine
3:25 PM	Renal Aspects of Thalassemia Sunil Bhandari, MBChB, MRCP, FRCP, PhD, M Clin Ed, FHEA, Hull & East Yorkshire Hospitals NHS Trust & Hull York Medical School
3:50 PM	Hepatocellular Carcinoma in Thalassemia. An Update of the Italian Registry Caterina Borgna-Pignatti, MD, University of Ferrara
4:15 PM	Iron and Cancer Suzy V. Torti, PhD, University of Connecticut Health Center
4:40 PM	Day 4 Adjourns (Poster Session posters removed)
Day 5 — Thursday, October 22, 2015
8:00 AM	Breakfast Location: Cassatt Ballroom
Joint Session 10: Emerging Therapies Location: Avedon Ballroom C/D Session Chair: Jeffery L. Miller, MD, Molecular Medicine Branch, National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health
9:00 AM	Luspatercept (ACE-536) Trial Update Antonio Piga, MD, Torino University
9:25 AM	Using Murine Thalassemia Models to Evaluate Novel Therapies Stefano Rivella, PhD, Children’s Hospital of Philadelphia
9:50 AM	Genome Editing Strategies to Induce HbF for the Beta-Hemoglobinopathies Daniel E. Bauer, MD, PhD, Boston Children’s Hospital; Dana-Farber Cancer Institute; Harvard Medical School
10:15 AM	Hepcidin Regulators Elizabeta Nemeth, PhD, University of California, Los Angeles
10:40 AM	Networking Coffee Break Location: Artist Foyer
Summary and Closing Remarks Location: Avedon Ballroom C/D
11:00 AM	Symposium Summary Arthur Nienhuis, MD, St. Jude Children’s Research Hospital
11:30 AM	The Bright Future and the Conundrum of Beta Thalassemia David G. Nathan, MD, Dana-Farber Cancer Institute
11:50 AM	Concluding Remarks Ellis J. Neufeld, MD, PhD, Dana-Farber/Boston Children’s Cancer and Blood Disorders Center; Harvard Medical School
12:00 PM	Farewell Luncheon Location: Cassatt Ballroom
1:00 PM	Symposium Concludes

Speakers

Chair, Scientific Organizing Committee

Ellis Neufeld, MD, PhD

Boston Children’s Hospital/Harvard Medical School

Organizers

Emanuele Angelucci, MD

Cancer Hospital "Armando Businco" Cagliari

Maria Domenica Cappellini, MD

University of Milan

Gina Cioffi, JD

Cooley's Anemia Foundation

Suthat Fucharoen, MD

Mahidol University Salaya Campus
Thalassemia Research Center, Thailand Institute of Science and Technology

Janet L. Kwiatkowski, MD, MSCE

Children’s Hospital of Philadelphia
Perelman School of Medicine, University of Pennsylvania

Antonio Piga, MD

Torino University

Stefano Rivella, PhD

Children's Hospital of Philadelphia

Ali Taher, MD, PhD, FRCP

American University of Beirut Medical Center

Alexis Thompson, MD, MPH

Northwestern University Feinberg School of Medicine
Ann and Robert H. Lurie Children's Hospital of Chicago

Vip Viprakasit, MD, PhD

Faculty of Medicine Siriraj Hospital, Mahidol University

Speakers and Session Chairs

Emanuele Angelucci, MD

Cancer Hospital "Armando Businco," Cagliari

Jodie L. Babitt, MD

Massachusetts General Hospital

Jonathan M. Barasch, MD, PhD

Columbia University

Daniel E. Bauer, MD, PhD

Boston Children's Hospital
Dana-Farber Cancer Institute
Harvard Medical School

Sunil Bhandari, MBChB, MRCP, FRCP, PhD, M Clin Ed, FHEA

Hull and East Yorkshire Hospitals NHS Trust and Hull York Medical School

James Bieker, PhD

Mount Sinai School of Medicine

Farid Boulad, MD

Memorial Sloan-Kettering Cancer Center

Caterina Borgna-Pignatti, MD

University of Ferrara

Maria Domenica Cappellini, MD

University of Milan

Marina Cavazzana-Calvo, MD, PhD

Hospital Necker, University Paris Descartes

David H.K. Chui, MD

Boston University School of Medicine

Thomas D. Coates, MD

Childrens Hospital Los Angeles, University of Southern California Keck School of Medicine

Alan R. Cohen, MD

The Children's Hospital of Philadelphia

Ann Dean, PhD

National Institutes of Health

David Dinan, MD

Nemours Children’s Hospital

Alexander (Hal) Drakesmith, PhD

Radcliffe Department of Medicine, University of Oxford

Kathleen Durst, MA, LCSW

Cooley's Anemia Foundation

Giuliana Ferrari, PhD

San Raffaele-Telethon Institute for Gene Therapy

Steven Flamm, MD

Northwestern Medical Center

Mark D. Fleming, MD, DPhil

Boston Children's Hospital

Suthat Fucharoen, MD

Mahidol University

Ellen B. Fung, PhD, RD

UCSF Benioff Children's Hospital Oakland

Andrea Giusti, MD

Galliera Hospital

Brooke Grindlinger, PhD

The New York Academy of Sciences

Olivier Hermine, MD, PhD

Hospital Necker, University Paris Descartes

Doug Higgs, FRS

University of Oxford

Eldad Arie Hod, MD

Columbia University

Janet L. Kwiatkowski, MD, MSCE

The Children's Hospital of Philadelphia

Ashutosh Lal, MD

University of California San Francisco Benioff Children's Hospital Oakland

Stephen A. Liebhaber, MD

Perelman School of Medicine at the University of Pennsylvania

Roberto Machado, MD

University of Illinois College of Medicine

Takahiro Maeda, MD, PhD

Brigham and Women's Hospital

Punam Malik, MD

Cincinnati Children’s Hospital

Jeffery L. Miller, MD

National Institute of Diabetes and Digestive and Kidney Diseases

David G. Nathan, MD

Dana-Farber Cancer Institute

Elizabeth (Ella) Nemeth, MD

University of California, Los Angeles

Ellis Neufeld, MD, PhD

Boston Children's Hospital

Arthur Nienhuis, MD

St. Jude Children's Research Hospital

Stuart H. Orkin, MD

Boston Children's Hospital and Dana Farber Cancer Institute

Dudley Pennell, MD

Imperial College London

Antonio Piga, MD

Torino University

John Porter, MA, MD, FRCP, FRC(Path)

University College London Hospitals

Scott Reeder, MD, PhD

University of Wisconsin School of Medicine and Public Health

Stefano Rivella, PhD

Children's Hospital of Philadelphia

Thomas M. Ryan, PhD

The University of Alabama at Birmingham

Vijay Sankaran, MD, PhD

Boston Children's Hospital
Dana-Farber Cancer Institute

Shalini Shenoy, MD

St. Louis Children's Hospital

Ali Taher, MD, PhD, FRCP

American University of Beirut Medical Center

Swee Lay Thein, MD

National Institutes of Health (as of March 2015)

Alexis Thompson, MD, MPH

Robert H. Lurie Comprehensive Cancer Center, Northwestern University
Ann and Robert H. Lurie Children's Hospital of Chicago

John F. Tisdale, MD

National Heart, Lung, and Blood Institute

Suzy V. Torti, PhD

University of Connecticut Health Center

Tim M. Townes, PhD

School of Medicine, The University of Alabama at Birmingham

Marsha J. Treadwell, PhD

Children's Hospital Oakland

Elliot Vichinsky, MD

Children's Hospital Oakland Research Institute

Anthony J. Viola, CPA

Cooley's Anemia Foundation

Vip Viprakasit, MD, PhD

Faculty of Medicine Siriraj Hospital, Mahidol University

Mark Walters, MD

Children's Hospital and Research Center Oakland

Richard Ward, MD

Toronto General Hospital

John C. Wood, MD, PhD

Children's Hospital Los Angeles

Coordinator

Jenna O'Neil

Boston Children's Hospital

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Tenth Cooley's Anemia Symposium

Registration Pricing

Agenda

Day 1 — Sunday, October 18, 2015

Day 2 — Monday, October 19, 2015

Joint Session I: Gene Therapy

Concurrent Session 2A: Gene Regulation 1

Concurrent Session 2B: Clinical Management 1

Concurrent Session 3A: Gene Regulation 2

Concurrent Session 3B: Clinical Management 2

Day 3 — Tuesday, October 20, 2015

Concurrent Breakfast Sessions

Joint Session: Clinical Keynote

Joint Session 4: Chelation

Joint Session 5: Imaging

Joint Session 6: Iron Regulation/Metabolism

Day 4 — Wednesday, October 21, 2015

Joint Breakfast Session

Joint Session 7: Clinical Management 3

Joint Session: Best of Oral Poster Presentations

Patient Presentation

Joint Session 8: Transplant

Joint Session 9: End Organ Damage

Day 5 — Thursday, October 22, 2015

Joint Session 10: Emerging Therapies

Summary and Closing Remarks

Speakers

Chair, Scientific Organizing Committee

Ellis Neufeld, MD, PhD

Organizers

Emanuele Angelucci, MD

Maria Domenica Cappellini, MD

Gina Cioffi, JD

Suthat Fucharoen, MD

Janet L. Kwiatkowski, MD, MSCE