Schedule

Sessions and Activities

The IDF 2017 National Conference is filled with valuable sessions and exciting activities. To get the most out of the conference, we encourage you to pace yourself and create a schedule that fits your interests and energy level.

Presenters, topics and times are subject to changes and updates. Admission to all education sessions, special events and meals is included in your registration fee.

Thursday, June 15, 2017

8:00 AM – 7:00 PM
Registration and Information Desk Open
On this day, childcare is only available to families participating in the Special CGD, SCID/CID and WAS Symposia.


10:00 AM – 11:30 AM
Special CGD Reception


11:30 AM – 5:00 PM
Special CGD Symposium
Special SCID and CID Symposium
Special WAS Symposium


1:30 PM – 2:30 PM
IDF Outreach Initiative Training
You can’t miss the opportunity to be a part of this grassroots movement to expand the reach and impact of IDF nationwide! Join us, and explore the various ways that you can offer support to the PI community through the IDF Outreach Initiative! Attendees will receive basic information about our IDF volunteer roles, which involve reaching out to healthcare professionals and organizing Get Connected Groups. You will also learn the ins and outs of working together to perform outreach in local communities, and find out how to get started. Information will also be available for veteran volunteers, with further training and exploration of the IDF Volunteer Connection Center.


2:30 PM – 3:30 PM
Advocacy Training: Enacting Change for the Community
Learn about the important policy issues impacting the PI community and how you can enact change. Develop skills and access resources to help you take action to effect policy changes at the state and national level. We will provide you with tips on how to succinctly and effectively share your story of living with PI with legislators and other policy makers.


3:30 PM – 4:30 PM
Quick Networking & Connections
Interact with others who have similar experiences living or dealing with a PI during this structured, fast paced networking event. Learn from each other in a series of brief one-on-one information exchanges.

Please attend the group that best describes you:

Adult with PI (33 to 49 years)
Adult with PI (50 Years and up)
Parents of Children with PI (birth to 10 years)
Parents of Teens & Young Adults with PI (16 years & up)
Parents of Youth with PI (11 to 15 years)
Partners of Individuals with PI
Young Adults with PI (19 to 32 years)


5:00 PM – 6:30 PM
Welcome to California Reception (TICKET REQUIRED)
Help us kick-off the IDF National Conference, the largest gathering of families living with PI in the world, on Thursday night! Hear what’s planned for the conference, mingle with other members of the PI community, including individuals and families, volunteers, presenters, sponsors, IDF Board of Trustees, IDF staff and more. Think California casual and wear casual attire. Bright colors and cool shades are encouraged! See the grand opening of the Exhibit Hall and enjoy light hors d’oeuvres, a fun time and a feeling of comradery. Note that this is not a full dinner. Please see page 3 for dining options.
Sponsored by Shire.


5:30 PM – 6:30 PM
Exhibit Hall Open


7:00 PM – 8:00 PM
Young Adult Meet-Up
Do you want to meet other young adults who understand and have some fun? Take this opportunity to meet up with other members of the PI community your age who have similar experiences. (For individuals with PI ages 19 to 32.)

Friday, June 16, 2017

6:45 AM – 6:00 PM
Registration and Information Desk Open


7:00 AM – 10:00 PM
IDF Youth Program
*Breakfast provided for those in Youth Program


7:30 AM – 9:00 AM
Breakfast Symposia (Select One)

Getting to Know Primary Immunodeficiency
Learn more about primary immunodeficiency diseases with this detailed overview that gives newcomers to the PI community a comprehensive understanding of the various diseases and provides everyone in and surrounding PI new information.
Sponsored by Shire.

  • Joseph Church, MD
    Children’s Hospital Los Angeles
  • E. Richard Stiehm, MD
    University of California – Los Angeles

Advances in Primary Immunodeficiency: Is It All in the Genes?
Take an advanced look into primary immunodeficiency diseases, exploring the changes that have been made over time to current findings that continue into today, including new treatments, breakthroughs and innovations, and what the future holds.
Sponsored by Shire.

  • Don Kohn, MD
    University of California – Los Angeles
  • Troy Torgerson, MD, PhD
    Seattle Children’s Hospital

9:15 AM – 10:15 AM
Opening Session: The Impact of Community
Now more than ever, the impact of the IDF community is critical. Together, we can create a better future for those living with PI. Join us as we examine how far we’ve come as a rare disease community and how much more we can accomplish in the future.
Sponsored by Shire.

  • Marcia Boyle
    IDF President & Founder
  • Rich Low
    IDF Board of Trustees
  • John Seymour
    Chair, IDF Board of Trustees

10:30 AM – 12:30 PM
Your Life, Your PI (Select One)
Chose the session that features your own primary immunodeficiency disease, and learn more about treatment options basic care, research advances and management of associated complications. This is the perfect opportunity for patients and family members to gain a better understanding of their primary immunodeficiency.

Common Variable Immune Deficiency (CVID)

  • Charlotte Cunningham-Rundles, MD, PhD
    Mt. Sinai Medical Center
  • Stephen Jolles, MD, PhD
    University Hospital of Wales

The Various Hyper IgE Syndromes (HIES)

  • Joshua Milner, MD
    National Institute of Allergy and Infectious Disease – NIH

Hyper IgM Syndrome (HIGM)

  • Maite de la Morena, MD
    University of Texas Southwestern Medical Center
  • Ramsay Fuleihan, MD
    Ann & Robert H. Lurie Children’s Hospital of Chicago

IgG Subclass Deficiency, Specific Antibody Deficiency (SAD) & Hypogammaglobulinemia

  • Mark Ballow, MD
    University of South Florida School of Medicine
  • Ralph Shapiro, MD
    Midwest Immunology Clinic

NK Cell Deficiency

  • Jordan Orange, MD, PhD
    Texas Children’s Hospital

NEMO

  • Eric Hanson, MD
    National Institute of Allergy and Infectious Disease – NIH

Selective IgA Deficiency

  • Marc Riedl, MD, MS
    University of California San Diego School of Medicine

X-Linked Agammaglobulinemia (XLA)

  • Howard Lederman, MD, PhD
    Johns Hopkins University School of Medicine
  • M. Elizabeth Younger, CPNP, PhD
    Johns Hopkins University School of Medicine

Unspecified Combined Immunodeficiencies with Autoimmunity & Infection
Patients with these type of diseases often have clinical symptoms that overlap with other immunodeficiencies, such as Common Variable Immune Deficiency (CVID) or Agammaglobulinemia, but they don’t fit neatly within those diagnoses. Examples of such disorders include CTLA-4 haploinsufficiency, STAT1 gain-of-function, IPEX, complement deficiencies and others.

  • Troy Torgerson, MD, PhD
    Seattle Children’s Hospital

10:30 AM – 2:30 PM
Special Symposia Continued (Select One)

Special Chronic Granulomatous Disease (CGD) Symposium
Special Severe Combined Immune Deficiency (SCID) & Combined Immune Deficiency (CID) Symposium
Special Wiskott-Aldrich Syndrome (WAS) Symposium


10:30 AM – 5:00 PM
Exhibit Hall Open


11:00 AM – 7:00 PM
Silent Auction Bidding


12:30 PM – 2:30 PM
Lunch


2:45 PM – 3:45 PM
Health & Life Management Sessions (Select One)

How to Cope: Managing Anxiety & Depression

  • Jennifer Pate, MD
    Baylor College of Medicine
  • John Seymour, PhD, LMFT
    Minnesota State University, Mankato

Let’s Talk Research: IDF PI CONNECT Live!

  • Christopher Scalchunes, MPH
    Immune Deficiency Foundation
  • Kathleen Sullivan, MD, PhD
    The Children’s Hospital of Philadelphia

4:00 PM – 4:45 PM
Health & Life Management Sessions (Select One)

Allergies & PI: Anaphylaxis, Asthma and Hives – Oh My!

  • Joshua Milner, MD
    National Institute of Allergy and Infectious Disease – NIH

It’s Complicated: The Relationship Between Autoimmunity & Immunodeficiency

  • Kathleen Sullivan, MD, PhD
    The Children’s Hospital of Philadelphia

Antibiotic & Antifungal Therapy: The Facts

  • Jennifer Puck, MD
    University of California – San Francisco

For the Ladies: Women’s Health & PI

  • Patricia Lugar, MD, MS
    Duke University School of Medicine

Chronic Sinusitis, Chronic Sinusitis, Chronic Sinusitis: Why It Keeps Coming Back & How to Deal With It

  • Ralph Shapiro, MD
    Midwest Immunology Clinic

Breathe In, Breathe Out: Lung Issues

  • Terry Harville, MD, PhD
    University of Arkansas for Medical Sciences

Understanding Immunological Testing

  • Manish Butte, MD, PhD
    University of California, Los Angeles

6:30 PM – 9:30 PM
IDF Zebra Gala & Silent Auction – Adult Dinner and Awards
Celebrate the 9th IDF National Conference with a festive Friday night! Enjoy great music, food, libations, recognitions, and, of course, a touch of zebra. Take part in our fabulous Silent Auction, which will kick off the eventful evening with relaxed, quiet bidding on a variety of wonderful items donated by the IDF community. In the past, auction items included giveaways, once-in-a-lifetime experiences, gift baskets and more. Attire for the night is festive—as always, zebra stripes are welcome.
Sponsored by CSL Behring.

This event is for adults. All youth ages 18 years and younger are encouraged attend one of the IDF Youth Program dinner events. You must pre-register your child for the IDF Youth program to attend.


6:00 PM – 10:00 PM
Friday Night Fun for Youth

Childcare, Kids Club & ‘Tween Scene Party*
The perfect time for the younger crowd to enjoy kid-friendly food, activities and entertainment.

Teen Celebration*
Targeted specifically for teens and designed for a great time, this party promises an evening of teen pleasing food, activities and entertainment.

*Attendees must be pre-registered for the IDF Youth Program to participate in these events.

Saturday, June 17, 2017

7:00 AM – 6:00 PM
Registration & Information Desk Open


7:30 AM – 3:00 PM
IDF Youth Program
*Breakfast provided for those in Youth Program


8:00 AM – 9:30 AM
Breakfast Symposium
Patient Power: Standing as a Community in Times of Change Get the latest updates from the people who know the facts, and learn about IDF’s policy initiatives and activities. With a change in administration, there have been many unanswered questions regarding the health insurance landscape. IDF stands firm to support and advocate for our community.
Sponsored by CSL Behring.

Space and availability are limited and will be determined on a first-come, first-served basis. A buffet breakfast will be served.


9:30 AM – 3:00 PM
Exhibit Hall Open


9:45 AM – 11:00 AM
Health & Life Management Sessions (Select One)

Stay Informed: FAQ’s for Common Variable Immune Deficiency (CVID)

  • Charlotte Cunningham-Rundles, MD, PhD
    Mt. Sinai Medical Center
  • Stephen Jolles, MD, PhD
    University Hospital of Wales

Survey Says: What You’ve Taught Us

  • Jordan Orange, MD, PhD
    Texas Children’s Hospital
  • Christopher Scalchunes, MPH
    Immune Deficiency Foundation
  • Kathleen Sullivan, MD, PhD
    The Children’s Hospital of Philadelphia

WAS Roundtable

  • Christina Mangurian, MD
    University of California – San Francisco

11:15 AM – 12:00 PM
Health & Life Management Sessions (Select One)

Clinical Trials: What to Consider

  • Colleen Danseareau, MSN, RN, CPN, CPHON
    Dana-Farber Boston Children’s Cancer and Blood Disorders Center
  • Elizabeth Garabedian, RN, MSLS
    National Human Genome Research Institute – NIH

Immunizations: The Risks & Benefits

  • Sudhir Gupta, MD, PhD
    University of California – Irvine

For Parents: Raising a Child Diagnosed with PI

  • Elizabeth Arias-Rubio, MSW, LCSW
    Children’s Hospital of Los Angeles
  • Ronald Ferdman, MD
    Children’s Hospital of Los Angeles

For Parents: Parenting a Teen or Young Adult Diagnosed with PI

  • William Blouin, MSN, ARNP, CPNP
    Nicklaus Children’s Hospital
  • Alexandra Matthews, PhD
    Private Practice

Life on Your Own: A Session for Young Adults Living with PI

  • Mary K Hintermeyer, APNP
    Children’s Hospital of Wisconsin
  • Jennifer Pate, MD
    Baylor College of Medicine

Understanding Immunoglobulin Therapy

  • Mark Ballow, MD
    University of South Florida School of Medicine
  • M. Elizabeth Younger, CPNP, PhD
    Johns Hopkins University School of Medicine

Stay Informed, Stay Insured: Facts on Health Insurance

  • Nichole Clark
    Immune Deficiency Foundation
  • Debbie Manning, BSN, RN, IgCN
    The Children’s Hospital of Philadelphia

12:15 PM – 2:15 PM
Lunch


2:15 PM – 3:00 PM
Health & Life Management Sessions (Select One)

Caring for the Caregiver

  • Christina Mangurian, MD
    University of California – San Francisco

Education: Communicating with School about PI

  • Katherine Antilla, MAEd
    Immune Deficiency Foundation
  • Christopher Riley
    Palmdale School District, California
  • Valerie Riley
    Lancaster School District, California

Can I Really Ask that Question? Answers for Living in Today’s World

  • William Blouin, MSN, ARNP, SPNP
    Niklaus Children’s Hospital
  • Patricia Lugar, MD, MS
    Duke University School of Medicine
  • Marc Riedl, MD, MS
    University of California San Diego School of Medicine

Managing Gastrointestinal (GI) Issues

  • Peter Mannon, MD, MS
    The University of Alabama at Birmingham

The Real Deal: Answering Your Practical Questions about Ig Therapy

  • Carla Duff, CCNP, MSN, CCRP, IgCN
    University of South Florida
  • Linda Schneider, BSN, RN, CPN, IgCN
    The Children’s Hospital of Philadelphia

Government Assistance Programs: Medicare, Medicaid & Social Security Income

  • Nichole Clark
    Immune Deficiency Foundation
  • William Leach, JD
    Patient Services, Inc

3:15 PM – 4:00 PM
Health & Life Management Sessions (Select One)

It’s Complicated: The Relationship Between Autoimmunity & Immunodeficiency (Repeat)

  • Kathleen Sullivan, MD, PhD
    The Children’s Hospital of Philadelphia

Stay Informed, Stay Insured: Facts on Health Insurance (Repeat)

  • Nichole Clark
    Immune Deficiency Foundation
  • Debbie Manning, BSN, RN, IgCN
    The Children’s Hospital of Philadelphia

Managing Gastrointestinal (GI) Issues (Repeat)

  • Peter Mannon, MD, MS
    The University of Alabama at Birmingham

Beyond Your Current Treatment: Complementary & Alternative Medicine

  • Terry Harville, MD, PhD
    University of Arkansas for Medical Sciences

The Real Deal: Answering Your Practical Questions about Ig Therapy (Repeat)

  • Carla Duff, CCNP, MSN, CCRP, IgCN
    University of South Florida
  • Linda Schneider, BSN, RN, CPN, IgCN
    The Children’s Hospital of Philadelphia

Who’s the Boss? Issues in Employment

  • Richard Low
    IDF Board of Trustees
  • Brian Rath, JD
    IDF Board of Trustees

4:00 PM – 4:30 PM
IDF Closing Session (TICKET REQUIRED)


4:30 PM – Park Closes
IDF Family Night at Disney (TICKET REQUIRED)
On Saturday, enter the magical world of Disney, where sailing with pirates, exploring exotic places, meeting fairy-tale characters, diving the deepest oceans and rocketing into space an happen all in one night. IDF Family Night at Disney gives patients and families an evening pass to enjoy attractions, entertainment, dining, events and tours in Anaheim’s happiest theme park. Buses begin departing for park at 4:30 PM.
Sponsored by Grifols.