Friday (Pre-Conference) July 10

Presenter

10:00am-6:00pm

Registration

PRE-CONFERENCE SESSIONS

1:00pm-5:30pm

ONLINE LEARNING LAB
(exact sessions to be determined)

·        AA&MDSIF Online Education Overview

·        Medical Research on the Internet – NLM

·        Introduction to Marrow Forums

1:00pm–6:00pm

Interviews with Experts and My Stories

2:00pm

PNH 101

Carlos M. DeCastro, III, MD

Duke University Medical Center

3:00pm

MDS 101

Gail Roboz, MD

Weill Medical College of Cornell University

4:00pm

Aplastic Anemia 101

David Margolis, MD

Children's Hospital of Wisconsin

6:00pm-7:00pm

Welcome Reception
(Hors d’oeuvres)

7:00pm-8:00pm

Keynote: The Rollercoaster of Chronic Illness: How to Add Joy to the Ride

Ann Steiner, PhD

University of California Medical School, San Francisco

8:00pm-9:00pm

Dessert Reception

Saturday July 11

7:00am-10:00am

Registration

7:00am-7:45am

Breakfast

8:00am-8:15am

Welcome and Introductions

John Huber

Executive Director

8:15am-8:50am

Fundamentals of Hematology and Bone Marrow Failure Diseases

David Steensma, MD, FACP

Mayo Clinic, Rochester

Gail Roboz, MD

Weill Medical College of Cornell University

9:00am-10:45am

Aplastic Anemia: Current Thinking on the Disease, Diagnosis, and Treatment

Neal Young, MD

National Heart, Lung and Blood Institute of the National Institutes of Health

MDS: Current Thinking on the Disease, Diagnosis, and Treatment

David Steensma, MD, FACP

Mayo Clinic, Rochester

Gail Roboz, MD

Weill Medical College of Cornell University

PNH: Current Thinking on the Disease, Diagnosis, and Treatment

Carlos M. DeCastro, III, MD

Duke University Medical Center

Jaroslaw Maciejewski, MD, PhD

Cleveland Clinic Taussig Cancer Institute

9:00am-12:00pm

Pediatric Issues: An Intimate Q&A session for Parents of Pediatric Patients

David Margolis, MD

Children's Hospital of Wisconsin

9:00am-12:00pm

KIDS ONLY:  Children’s Workshop  (Part 1)

Tracy Councill, MA, ATR-BC

Georgetown University Lombardi Comprehensive Cancer Center

Susan Carson, RN, MSN, CPNP

Children’s Hospital of Los Angeles

10:45am-11:00am

BREAK

11:00am-12:00pm

Peripheral Blood Stem Cell and Bone Marrow Transplantation: Understanding Your Options

H. Joachim Deeg, MD

Fred Hutchinson Cancer Research Center

PNH and Your Health Insurance

Kevin Lucia, MHP, JD
Georgetown University Health Policy Institute

Iron Overload: Prevention, Diagnosis and Treatment

David Steensma, MD

Mayo Clinic, Rochester

Clinical Trials: An Option to Consider

Barbara Weinstein, RN  
Olga Nunez, RN

National Institutes of Health

12:00pm-1:30pm

LUNCH

·        Volunteer Recognition Lunch

·        Getting involved as a volunteer and being an activist. Call to action.

·        My Story project update and sharing

AAMDS Staff

1:00pm-5:30pm

KIDS ONLY:  Children’s Workshop  (Part 2)

David Margolis, MD

Children's Hospital of Wisconsin

Tracy Councill, MA, ATR-BC

Georgetown University Medical Center's Lombardi Cancer Center

1:15pm-2:15pm

Aplastic Anemia and Your Health Insurance

Kevin Lucia, MHP, JD

Georgetown University Health Policy Institute

A Deeper Look at PNH:

Understanding the Complement Cascade and Hemolysis

Jaroslaw Maciejewski, MD, PhD

Cleveland Clinic Taussig Cancer Institute

Iron Overload: Prevention, Diagnosis and Treatment

David Steensma, MD

Mayo Clinic, Rochester

Blood Transfusions and Growth Factors:

A closer look at risks, benefits and options

Susan Carson, RN, MSN, CPNH
Children’s Hospital Los Angeles

Gail Roboz, MD

Weill Medical College of Cornell University

2:15pm-2:30pm

BREAK

2:30pm-3:30pm

MDS and Your Health Insurance

Kevin Lucia, MHP, JD
Georgetown University Health Policy Institute

Peripheral Blood Stem Cell and Bone Marrow Transplantation:

Understanding Your Options

H. Joachim Deeg, MD

Fred Hutchinson Cancer Research Center

Blood Transfusions vs. Growth Factors:

Examining the Risks, Benefits and Options

Susan Carson, RN, MSN, CPNH

Children’s Hospital Los Angeles

Gail Roboz, MD

Weill Medical College of Cornell University

Clinical Trials: An Option to Consider

3:45pm-4:00pm

BREAK

4:00pm-5:45pm

Support Workshop for MDS Patients

Support Workshop for PNH Patients

Support Workshop for Aplastic Anemia Patients

Support Workshop for Parents of Pediatric Patients (4:00 to 5:00 p.m. only)

Support Workshop for Parents of Adult Patients

Support Workshop for Spouses/Partners
(Last name A-M)

Support Workshop for Spouses/Partners
(Last name N-Z)

5:30pm

Parents Join Kids (Ice Cream Social)

6:00pm–8:00pm

Special Event Planned

Sunday July 12

7:15am-8:15am

Breakfast

8:00am-11:15am

Kids Room Available – games, movies & fun!

8:15-8:50am

Advances in Treatment: Emerging Therapies for Bone Marrow Failure Diseases 

Ron Paquette, MD

Ronald Reagan UCLA Medical Center

9:00am-10:00am

PNH: Long-Term and Post-Treatment Issues

Carlos M. DeCastro, III, MD

Duke University Medical Center

MDS: Long-Term and Post-Treatment Issues

Gail Roboz, MD

Weill Medical College of Cornell University

Aplastic Anemia: Long-Term and Post-Treatment Issues

Ron Paquette, MD

Ronald Reagan UCLA Medical Center

10:00am-10:15am

BREAK

10:15am-11:15pm

Complementary and Alternative Therapies:

Myths, Realities and Opportunities

Brent Bauer, MD

Mayo Clinic, Rochester

Beating Fatigue

Lillian Nail, PhD

Oregon Health & Science University

Intimacy, Sex and Bone Marrow Failure Disease

Isabel Schuermeyer, MD

Cleveland Clinic Taussig Cancer Institute

Communication Tips for Better Living with Bone Marrow Failure Disease

Ann Steiner, PhD

University of California Medical School, San Francisco

11:15am-11:30am

BREAK

11:30am-12:30pm

Complementary and Alternative Therapies:

Myths, Realities and Opportunities

Brent Bauer, MD

Mayo Clinic, Rochester

Intimacy, Sexuality and Bone Marrow Failure Disease

Isabel Schuermeyer, MD

Cleveland Clinic Taussig Cancer Institute

Beating Fatigue

Lillian Nail, PhD

Oregon Health & Science University

Communication Tips for Better Living with Bone Marrow Failure Disease

Ann Steiner, PhD

University of California Medical School, San Francisco

12:30pm-2:15pm

LUNCH & SURVIVORS CELEBRATION

Keynote: Ruben Mesa, MD

Mayo Clinic, Rochester

2:15pm-2:30pm

Closing Remarks