IDF 2011 National Conference Brochure

Immune Deficiency Foundation

Registration Information


Table of Contents
Supporters ....................................................................................... Inside Front Cover

Registration Information ............................................................................................. 2

Youth Programs ......................................................................................................... 2

Conference Information.............................................................................................. 3

Hotel Information ...................................................................................................... 3

Scholarships ............................................................................................................. 4

Transportation .......................................................................................................... 4

Exhibit Hall .............................................................................................................. 4

Sessions and Activities ......................................................................................... 5–10

Professional Education Program .......................................................................... 11–12

THINK ZEBRA!.................................................................................. Inside Back Cover

2011 National Conference Sponsors
Legacy Sponsors
Baxter Healthcare
CSL Behring
Talecris Biotherapeutics

Silver Sponsors
Grifols
IgG America/ASD Healthcare/US Bioservices

2011 National Conference • June 23–25 • Phoenix, AZ

Join Us at the Immune Deficiency Foundation
2011 National Conference and Celebrate 30 Years
of Advocacy, Education and Research!
• Welcome to the Wild, Wild, West!
Join the IDF for drinks, appetizers and fellowship as we renew old friendships, and meet new
acquaintances at our 2011 National Conference Welcome Reception in the Grand Canyon Ballroom!
Childcare will be available.
Sponsored by CSL Behring

• Opening Session
Help kick off our Sixth National Conference at this Friday morning gathering! Learn about the amazing
role IDF has played in the primary immunodeficiency community during the last 30 years!
Sponsored by Talecris Biotherapeutics

• Healthcare Sessions presented by Expert Immunologists
World-renowned immunologists will share their time and expertise with patients and families to help you better
understand and manage your primary immunodeficiency.

• Life Management Presentations
Skills, suggestions and solutions to help you navigate through life’s journey of living with primary
immunodeficiencies.

• Professional Medical Education Program
A special medical track for healthcare professionals will feature sessions about primary immunodeficiency
diseases on Friday. Continuing Medical Education credits are available for participants.

• IDF 30th Anniversary Celebration on Friday Night
Enjoy an evening of music, dinner and a fabulous silent auction while celebrating this remarkable IDF
milestone! Join with old and new friends from all over the country to celebrate 30 Years of Advocacy,
Education and Research!

• Southwestern Family Festival on Saturday Night
The whole family will enjoy this party that celebrates many of the wonders of the Southwest! Dinner, games
and entertainment will highlight the exotic blend of Native American, Mexican and the colorful Western
cultures.
Sponsored by Baxter Healthcare

• Youth Programs for our Younger Attendees
Fun, age appropriate activities and educational sessions are planned for everyone in the family, even as
young as 6 months old! Be sure to register your children for Childcare (6 mo - 4 years), Kids Club (ages 5 -
9 years), ‘Tween Scene (ages 10 -12 years) or the Teen Program (ages 13 -18 years).

Mission Statement
The Immune Deficiency Foundation is the national patient organization dedicated to improving the diagnosis, treatment
and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research.
www.primaryimmune.org

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Registration Information
All online registrations will be entered to win a $500 gift card!
Easy, online registration is available on our Web site www.primaryimmune.org. If you register online, your name
will be entered into a raffle for a $500 gift card! It will be awarded during the Thursday Welcome Reception.
Registration fees include access to all meals and sessions. Conference attendees must submit the total conference
registration fees when you register.
If you are NOT able to register online, please call 414.918.3022 to request a registration form. Registration is
available on a first come, first served basis.

Early Registration Regular Registration
On or before April 8, 2011 April 9 - May 30, 2011
Patients and Families
Individual registration $115 $165
Family (Up to 4 members) $195 $245
Extra person (age 13 and up) $50 $50
Youth Programs $50 $50
Healthcare, Government and Industry
Industry (non-Sponsoring Company) $400 $450
Healthcare professional $250 $300
Government $150 $200
Professional Medical Education Program $50 $100
Professional Medical Education Program & National Conference $165 $265

Youth Programs
To meet the needs of all conference attendees, youth programs that emphasize fun, age-appropriate activities and
educational sessions are available. The cost for these programs, Childcare, Kid’s Club, ‘Tween Scene and Teen Program is
$50 per child to registered conference attendees.

Childcare (ages 6 months - 4 years) Kid’s Club (ages 5 - 9 years)
On-site childcare during the conference is available for ‘Tween Scene (ages 10 - 12 years)
children at the JW Marriott Desert Ridge Resort and Spa
on a first-come/first-served basis. Registered conference Teen Program (ages 13 - 18 years)
attendees can use this service provided by Kiddie Corp, Youth are encouraged to participate in the IDF 2011
an organization that provides high quality children and National Conference Youth Programs. Fun, age-
youth services for special events and conferences. appropriate activities and educational programming
will be provided at the hotel. A session for teens will
be available on Thursday, with the rest of the program
beginning on Friday. An off-site trip to the Arizona
Youth Programs will be available:
Science Center is planned for Friday afternoon.
Thursday, June 23, 2011 8:00 AM to 7:00 PM
Friday, June 24, 2011 7:00 AM to 10:00 PM
Saturday, June 25, 2011 7:00 AM to 7:00 PM
NOTE: If you are interested in having your child participate in any of the youth programs during the conference,
please indicate so on the online registration form. You will also need to fill out a Kiddie Corp registration form.

Questions? Call the IDF National Conference Office at 414.918.3022
or email conference@primaryimmune.org

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Accomodations Hotel Room Reservations
All sessions and events for the IDF 2011 National Room reservations are available for the conference nights
Conference will be held at the JW Marriott Desert Ridge (Wednesday, June 22 - Saturday, June 25) at a group room
Resort and Spa in Phoenix, Arizona. rate of $189 + tax for all rooms at the JW Marriott Desert
Ridge Resort and Spa. Maximum capacity is 5 people per
JW Marriott Desert Ridge Resort and Spa room.
If you wish to extend your stay, the IDF group rate is
available on limited rooms for Tuesday, June 21 and
Sunday, June 26. There may also be limited space
www.jwdesertridgeresort.com available for these dates at the hotel standard rate.
Inspired by the majesty of the Grand Canyon, Desert Ridge In order to assure your guest room is booked for the
is synonymous with serenity and relaxation. Set on 316 IDF 2011 National Conference you must make your
acres in the Sonoran Desert, this award-winning destination reservations prior to May 31, 2011. Online reservations
encourages leisure, calms the senses and conversely, offers are available by going to www.primaryimmune.org
a wide choice of activities ensuring a fun time for the whole and clicking on IDF 2011 National Conference where there
family. When you’re not attending seminars facilitated is a link for all Marriott reservations. If you wish, you can
by top immunologists, participating in life management call 800.266.9432 and tell the reservation agent that you
sessions or networking with peers, you’ll enjoy luxurious are with the Immune Deficiency Foundation 2011 National
spa treatments, refreshing recreational activities, stunning Conference and your reduced rate will go into effect. A
sunsets, and magnificent mountain views. major credit card is required to guarantee and hold your
reservation. Your credit card will be charged one room
Desert Ridge also features four acres of cool, sparkling
night when your reservation is made.
swimming pools, multiple waterways that wind through the
landscape and inviting palm-lined pathways. An immense
waterfall is the centerpiece of the main pool, and families
and adventure seekers alike enjoy floating on the resort’s Reel Stories
Lazy River and Serpentine Slide. Offer encouragement and
Desert Ridge offers two 18-hole championship golf courses. inspiration to others by visiting
A 25% discount is available for the Revive Spa and for Studio IDF and record your story
golf services during your stay. Please mention that you are for the “Reel Stories” channel on
with IDF when you book these services and the discount the IDF Website. Times TBD.
will be applied. The resort is centrally located for many of
Arizona’s awe-inspiring recreation areas. Hiking, mountain
biking, horseback riding, fishing, cycling and water sports
are just a short drive from the resort.

Conference Information
Ticketed Events Conference Attire
A select number of conference events and sessions require All sessions other than the Friday night event are casual
advance registration. These events are noted with a attire. All conference session will be held in the hotel
on the registration form. There are a limited number of meeting rooms, which are air-conditioned. However, please
seats available during these events. It is important that you remember, everyone has their own personal preferences for
indicate the number of people who will be attending each temperature and it is often difficult to control temperatures
session (including yourself) on the registration form. You will in a hotel setting. It is recommended to bring along a light
receive a personal itinerary and tickets in your registration jacket or sweater to the session rooms.
packets. Access will be denied to these events if you do not
Dress for the Friday night 30th Anniversary Celebration
have a ticket. Please note, there is no additional charge for
event is festive - with a touch of zebra - if you wish!
ticketed events.
Conference Etiquette
Name Badges
Please be considerate of others during all educational
All National Conference attendees will receive a name
sessions and turn off all cell phones and pagers or set them
badge with their registration packet. These badges should
to vibrate. Please arrive on time or early for the sessions you
be worn at all times inside the hotel or on the youth off-
plan to attend, allowing time to add extra chairs if necessary.
site trip. Badges will be used to control access to various
sessions and activities.
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Scholarships No Smoking Policy
A limited number of partial scholarships are available based Marriott is committed to providing its guests and associates
on financial need and are provided on a first-come, first- with a smoke-free environment, and is proud to boast one
served basis. If you are interested in a partial scholarship of the most comprehensive smoke-free hotel policies in the
that will cover your hotel costs only (June 23, 24 and 25), industry. Although smoking is not permitted within hotel
please complete the “Scholarship Application” section on the buildings themselves, guests who smoke are permitted to do
online registration form. You will be asked to upload a letter so outside in designated areas.
(in Microsoft Word or pdf format) that includes information
describing your diagnosis, your financial need and the
benefit you hope to derive from attending the conference. Transportation
If you are not able to register online, you will need to Super Shuttle - Approximate fare: $22 per person (one way)
complete a registration form and send it with the letter to (Reservations are required by calling 877.300.4826)
apply to Immune Deficiency Foundation, Attn: IDF 2011 Airport shuttle service - Approximate fare: $60 (one way)
National Conference Scholarship, 40 West Chesapeake
Taxi - Approximate fare: $60 (one way)
Ave. Suite 308, Towson, MD 21204.
Hertz Car Rental (onsite at JW Marriott Desert Ridge)
The deadline for scholarship applications is April 8, 2011
480.538.5480
Please note, registration and travel costs are not included
in the partial scholarship. Due to the limited number of Driving Directions
scholarships available, preference will be given to first-time From Phoenix Sky Harbor International Airport - PHX
conference attendees. (Approximately 19 miles)
Sponsored by Baxter Healthcare Driving Directions: Take 24th Street Exit from Phoenix Sky
Additional scholarships are available from the IDF SCID Harbor International Airport and follow signs to 51 North;
Initiative and the Arlen Sprague Memorial Scholarship. stay on 51 North until it ends at Loop 101. Exit 101 East
and stay in right lane to exit Tatum Blvd. Turn left onto
Tatum Blvd. You’ll pass Desert Ridge Marketplace on right.
Special Accessibility Needs Turn right at Deer Valley Road. Turn left at Marriott Drive.
If you require special arrangements in order to fully
participate in the conference, please contact the IDF
National Conference Office at 414.918.3022.

Cancellation Policy
If you need to cancel your registration for the IDF 2011
National Conference, you must submit your request to
cancel in writing prior to May 31, 2011. All fees, less a $50
administrative charge will be refunded if a written request is
received before the May 31 deadline. After June 1, 2011 no
refunds will be issued.

Exhibit Hall
Be sure to allow adequate time in your daily schedule to visit the Exhibit Hall located in the Grand Saguaro
Ballroom at the JW Marriott Desert Ridge Resort and Spa. Take time to speak with representatives of companies
that provide services or products related to primary immunodeficiency diseases. Promotional materials will not be
permitted in the meeting rooms, registration or reception areas or any location other than the JW Marriott Desert
Ridge Resort and Spa designated exhibit space. Respecting confidentiality, attendees are not required to provide
name and/or contact information to any exhibitor for any reason.

Friday, June 24, 2011 Saturday, June 25, 2011
10:30 AM – 5:30 PM 10:00 AM – 5:00 PM

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Sessions And Activities
Presenters and presentation times are subject to changes Howard Lederman, MD, PhD
and updates. Admission to all educational sessions, special Johns Hopkins Hospital
events and meals is included in your registration fee. M. Elizabeth Younger, CPNP, PhD
Johns Hopkins Hospital
THURSDAY, JUNE 23, 2011
2:45 PM – 3:30 PM
EARLY MORNING IDF Electronic Personal Health Record (EPHR)
If you would like to participate in an IDF Golf Outing, please call Let technology work for you! IDF’s new web-based patient resource,
IDF for more information at 800.296.4433. the EPHR was designed for patients and family members living with
PIDD. Learn how this user-friendly tool can simplify your record
8:00 AM – 9:00 PM keeping and your family’s healthcare.
Registration / Information Desk Open Debra Adlis
IDF Chief Financial Officer
8:30 AM – 5:00 PM Susan Manley
ADA-SCID Education Program IDF Volunteer - Illinois
Throughout this day long program, families affected by
ADA-SCID will benefit from the rare opportunity to share 4:00 PM – 5:15 PM
experiences and present concerns to experts in ADA-SCID, Bone Making Connections - Person to Person
Marrow Transplantation (BMT) and Genetics. The power of community! Meet people like yourself who share
Topics Include: similar situations living with a primary immunodeficiency disease
• History of the Disease and learn from their personal experiences and knowledge. Then
• What does ADA Do? share a few ideas yourself! What you know might make a big
• Typical Clinical Presentation and Diagnosis difference in someone’s life!
• Neurological and Psychosocial Issues Please register for the group that best describes you:
• Other Non-immunological Complications • Adult Patients (50 years and up)
• HCT-Hematopoietic Cell Transplantation Lead Presenter-Donna Marie Meszaros, PhD
• PEG-ADA Therapy Abaris and Apex Behavioral Health Clinics
• ADA-SCID Registries • Adult Patients (30 to 49 years)
Lead Presenter-Leslie Harman, MA
Speakers:
Private Practice Therapist
Fabio Candotti, MD
National Institute of Allergy and Infectious Diseases • Young Adult Patients (19 to 29 years)
Bobby Gaspar, MD, PhD Lead Presenter-Laura Guenther, LCSW
Centre for Paediatric Primary Immunodefiency - London, England University of Illinois, Chicago
Mike Hershfield, MD • Parents of Teens and Young Adults (16 years and up)
Duke University School of Medicine Lead Presenter-Jodi Talb, LCSW
Private Practice Social Worker
Rochelle Hirschhorn, MD
New York University • Parents of Youth (11 to 15 years)
Alessandro Aiuti, MD, PhD Lead Presenter-John Seymour, PhD, LMFT
San Raffaele Telethon Institute for Gene Therapy - Milan, Italy University of Minnesota, Mankato
Mort Cowan, MD • Parents of Children (birth to 10 years)
University of California - San Francisco Lead Presenter-Rebecca Wang, MS
Private Practice Therapist
Don Kohn, MD
University of California - Los Angeles • Partners of Patients
Lead Presenter-Jennifer Pate, MD
Childcare will be available for this program
St. Luke’s Episcopal Hospital
For more information please call IDF at 800.296.4433
We will continue this program with a ADA-SCID 5:15 PM – 6:30 PM
Family Discussion on Friday at 10:30 am. Other Welcome to the Wild, Wild, West! An IDF
sessions of interest will be offered during the Welcome…It’s More Grand than the Canyon!
day on Friday and Saturday. Join the IDF for drinks, appetizers and entertainment as
we renew old friendships, meet new acquaintances at
2:00 PM – 2:45 PM our celebration of thirty years of advocacy, education and
research! Gather in the Grand Canyon Ballroom and meet
Introduction to Primary Immunodeficiency
conference presenters, industry representatives, IDF volunteers,
Invaluable to understanding of the immune system and primary
board members and staff. Childcare is available for those 6
immunodeficiency diseases, this session is open to all conference
months to 12 years.
attendees, but encouraged as a “must” for newly diagnosed
patients, family members and first time conference attendees! Sponsored by CSL Behring

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Sessions and Activities, continued.
FRIDAY, JUNE 24, 2011 DiGeorge Syndrome
Kathleen Sullivan, MD, PhD
7:00 AM – 6:00 PM Children’s Hospital of Philadelphia
Registration / Information Desk Open Hereditary Angioedema and Complement
Deficiency
7:00 AM – 5:30 PM Michael Frank, MD
Childcare, Youth and Teen Programs Duke University School of Medicine
Hyper IgE Syndrome
8:00 AM – 9:00 AM
Alexandra Freeman, MD
Continental Breakfast National Institute of Allergy and Infectious Diseases
7:30 AM – 9:00 AM Hyper IgM Syndrome
Breakfast Symposium Ramsay Fuleihan, MD
Northwestern University – Feinberg School of Medicine
Primary Immunodeficiencies: What’s on the Horizon
You will want to register early for this chance to hear experts IgG Subclass Deficiency and Specific Antibody
discuss cutting-edge medical treatments, pioneering gene therapy Deficiency
advancements, life-saving bone marrow transplantation potential, Francisco (Tony) Bonilla, MD, PhD
newborn screening progress and more. Space is limited to a first- Children’s Hospital Boston
come first-served basis. A buffet breakfast will be served. Terry Harville, MD, PhD
Sponsored by Talecris Biotherapeutics University of Arkansas for Medical Sciences
Hans Ochs, MD (Moderator) Selective IgA Deficiency
University of Washington School of Medicine Lyman Yel, MD
Rebecca Buckley, MD University of California - Irvine
Duke University School of Medicine Joseph Roberts, MD, PhD
Charlotte Cunningham-Rundles, MD, PhD Duke University School of Medicine
Mt. Sinai School of Medicine X-linked Agammaglobulinemia
Adrian Thrasher, MBBS, PhD, MRCPH Mary Ellen Conley, MD
Institute of Child Health – London, England St. Jude Children’s Research Hospital

9:15 AM – 10:15 AM 10:30 AM – 1:30 PM
Opening Session Chronic Granulomotous Disease
IDF: 30 years of Advocacy, Education and Steven Holland, MD
National Institute of Allergy and Infectious Diseases
Research and more!
Marcia Boyle Harry Malech, MD
IDF President & Founder National Institute of Allergy and Infectious Diseases
Guest Speakers TBD Reinhard Seger, MD
University Children’s Hospital – Zurich, Switzerland
Severe Combined Immunodeficiency and
Combined Immune Deficiency
10:30 AM – 12:30 PM Alessandro Auiti, MD, PhD
San Raffaele Telethon Institute for Gene Therapy - Milan, Italy
Specific Primary Immunodeficiency Disease
Sessions (Select one) Rebecca Buckley, MD
Offering a wealth of information, individuals and family members Duke University School of Medicine
affected by a particular PIDD will gain better understanding of their Javier Chinen, MD
specific disease, treatment options, research advances and management Texas Children’s Hospital
of associated complications and basic care in these sessions. Mort Cowan, MD
ADA-SCID Family Discussion University of California – San Francisco
Bobby Gaspar, MD, PhD Jennifer Puck, MD
Centre for Paediatric Primary Immunodeficiency - Lnodon, England University of California – San Francisco
Michael Hershfield, MD Adrian Thrasher, MBBS, PhD, MRCPH
Duke University School of Medicine Institute of Child Health – London, England
Rochelle Hirschhorn, MD
New York University 10:30 AM – 2:30 PM
Common Variable Immune Deficiency NEMO
Charlotte Cunningham-Rundles, MD, PhD Laurence Cheng, MD
Mt. Sinai School of Medicine University of California – San Francisco

6


Erwin Gelfand, MD to gain insight of what these therapies offer and learn about
National Jewish Hospital their future prospects.
Jordan Orange, MD, PhD Rebecca Buckley, MD
Children’s Hospital of Philadelphia Duke University School of Medicine
Sung-Yun Pai, MD Mort Cowan, MD
Children’s Hospital Boston University of California – San Francisco
Wiskott-Aldrich Syndrome Don Kohn, MD
Alessandro Auiti, MD, PhD University of California – Los Angeles
San Raffaele Telethon Institute For Gene Therapy - Milan, Italy Alessandro Auiti, MD, PhD
James Bussel, MD San Raffaele Telethon Institute For Gene Therapy - Milan, Italy
Weill Cornell Medical College Dealing with Depression
Fabio Candotti, MD Everyone feels sad or blue at times, but when it won’t go
National Institute of Allergy and Infectious Diseases away, it might be depression. Learn the causes, signs and
Alexandra Filipovich, MD symptoms, treatments and outcomes of depression, and what
Cincinnati Children’s Hospital it may mean to you.
Hans Ochs, MD Jennifer Pate, MD
University of Washington School of Medicine St. Lukes Episcopal Hospital
Adrian Thrasher, MBBS, PhD, MRCPH The Connection Between Chronic Sinusitis and
Institute of Child Health – London, England Primary Immunodeficiency Diseases
Are you one of the many patients with PIDD who lives with
10:30 AM – 5:30 PM — Exhibit Hall Open chronic sinusitis? Learn how to manage this condition in a
session that offers a wealth of information about one of the most
12:30 PM – 2:30 PM — Lunch common health complaints leading to an office visit in the U.S.
Ralph Shapiro, MD
2:45 PM – 3:45 PM
Midwest Immunology Clinic
Healthcare & Life Management Sessions (Select one)
Update your personal understanding with in-depth information
about specific issues related to primary immunodeficiency 4:00 PM – 5:00 PM
diseases and learn more about their management. Healthcare & Life Management Sessions (Select one)
The Relationship Between Autoimmunity and
Understanding Antibiotic and Antifungal Therapy
Primary Immunodeficiency (Repeat)
Learn what goes into the treatment decisions your physician makes
Although it may seem illogical, PIDD is frequently complicated
when it comes to prescribing antibiotic and antifungal therapy.
by autoimmune conditions and these conditions can pose
Jennifer Puck, MD significant challenges to patients. Learn about the insights into
University of California – San Francisco how immunodeficiencies can predispose to autoimmunity.
Insight Into Immunological Testing James Bussel, MD
Laboratory studies are essential to evaluate the immune Weill Cornell Medical College
system to determine the presence of PIDD. Gain knowledge
Understanding Antibiotic and Antifungal
on basic approaches in the lab, categories of tests, and how
to better understand the tests and their results. Therapy (Repeat)
Learn what goes into the treatment decisions your physician makes
Howard Lederman, MD, PhD when it comes to prescribing antibiotic and antifungal therapy.
Jennifer Puck, MD
M. Elizabeth Younger, CPNP, PhD University of California – San Francisco
The Connection Between Chronic Sinusitis and
The Relationship Between Autoimmunity and Primary Immunodeficiency Diseases (Repeat)
Immunodeficiency Are you one of the many patients with PIDD who lives with
Although it may seem illogical, PIDD is frequently complicated chronic sinusitis? Learn how to manage this condition in a
by autoimmune conditions and these conditions can pose session that’s a wealth of information about one of the most
significant challenges to patients. Learn about the insights into common health complaints leading to an office visit in the U.S.
how immunodeficiencies can predispose to autoimmunity.
Ralph Shapiro, MD
James Bussell, MD Midwest Immunology Clinic
Weill Cornell Medical College
Nutrition
Overview of Gene Therapy and Bone Marrow While good dietary habits are important for everyone, they
Transplantation are extremely critical for the patient with PIDD. In a nation
Showing great promise for treatment success, these therapies where we are constantly reminded to “eat this, not that,” learn
are still mysterious to many. Attend this introductory overview about a balanced diet and adequate nutrition from an expert.
Speaker TBD
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Immunoglobulin: Safeguards of the Collection SATURDAY, JUNE 25, 2011
and Manufacturing Processes
Many patients with PIDD rely on immunoglobulin, the therapy 7:00 AM – 5:00 PM
made from plasma collected from committed and qualified Registration / Information Desk Open
donors. Hear about this unique process, beginning with the
plasma donor, through manufacturing and final distribution 7:00 AM – 5:00 PM
to patients. You will be amazed at the complexities and Childcare, Youth Program and Teen Program
safeguards involved with creating Ig. Discover how you can
make a difference by visiting a plasma center. 8:00 AM – 9:00 AM
Jan Bult, President and CEO Continental Breakfast
Plasma Protein Therapeutics Association
Katherine Antilla, MAEd 8:00 AM – 9:30 AM
IDF Director of Education & Volunteer Development Breakfast Symposium
Health Care Reform: What it Means
to Our Community
5:00 PM – 7:00 PM As public opinion remains divided about health care reform, the
IDF THINK ZEBRA! Silent Auction majority of Americans can agree on one thing: they’re confused. If
Please join us for a very special Silent Auction Friday night. you wonder how reform affects your family and you, this breakfast
Bid on treasures, including autographed memorabilia, symposium is not to be missed. A panel of experts will also help
jewelry, crafts, a vast selection of unique baskets, decipher some of IDF’s key public issues that affect members of the
and other goodies. Bid early and often! 60% Black

primary immunodeficiency community.
TM

If you’d like to donate an auction item,
60% Black

PMS 278
Interested participants are encouraged to register early. Space and
please call IDF at 800.296.4433 PMS 376
availability are limited and will be determined on a first-come, first-
served basis. A buffet breakfast will be served.
6:30 PM – 9:30 PM Sponsored by CSL Behring
Happy 30th Anniversary IDF! Lawrence (Larry) LaMotte Julie Birkofer
Adult Dinner and Awards IDF Director of Public Policy Plasma Protein Therapeutics Association
Enjoy yourself as we celebrate three decades of advocacy,
Sue Ramthun
education and research in the primary immunodeficiency
Hart Health Strategies
community! Join in the festivities with entertainment, dinner,
awards and a fabulous silent auction. It’s time to party!
9:45 AM – 10:45 AM
Dress for the anniversary celebration event is festive, with a Healthcare & Life Management Sessions
touch of zebra, if you wish.
Managing Gastrointestinal Complications
Sponsored by Talecris Biotherapeutics Discover different ways to monitor, diagnose, and treat GI
Note: This event is for adults only. All youth ages 18 years and issues, a condition that troubles many patients with PIDD, in
younger should attend one of the youth program dinner events. this valuable session.
You must register your child for the Youth Program to attend. Laurence Cheng, MD
University of California – San Francisco
6:00 PM – 10:00 PM Growth and Development of Children with PIDD
Happy Birthday IDF! Find out why the growth and development is affected in some
Childcare, Kids Club, ‘Tween Scene children with PIDD and services to help you and your child.
Celebration Dinner Terry Harville, MD, PhD
Who knows how to celebrate a birthday as well as a kid? University of Arkansas for Medical Sciences
This fun, kid-friendly night of dinner followed by an evening
Immunoglobulin Therapy
of games, activities and entertaining videos is open to all
Learn about the benefits of immunoglobulin therapy and the
children and youth 6 months to 12 years old. (Participants
role it plays for patients with PIDD. Both intravenous (IVIG)
must be registered for one of the Youth Program to participate
and subcutaneous (SCIG) therapies will be discussed as well
in this event).
as common reactions to this life saving therapy and ways to
alleviate the side effects.
6:00 PM – 10:00 PM
Jordan Orange, MD, PhD
C-E-L-E-B-R-A-T-E Teen Dinner
Children’s Hospital of Philadelphia
Targeted specifically for teens and designed for a great time,
this party promises an evening of teen-friendly food, games, E. Richard Stiehm, MD
activities and a movie. Guaranteed to keep enthusiasm University of California – Los Angeles
high! (Participants must be registered in the Teen program to Debra Sedlak, CPNP
participate in this event). Duke University School of Medicine

8


Dealing with Lung Disease Employment Issues
According to a 2008 IDF patient survey, nearly two out of five Learn about your rights in the workplace. Gain knowledge
patients with PIDD reported permanent impairment of lung about the Family & Medical Leave Act (FMLA), the Americans
function prior to diagnosis. Discover ways to help relieve the with Disabilities Act (ADA) and discuss disclosure issues.
symptoms and prevent complications. Allison Nichol
John Routes, MD Department of Justice
Medical College of Wisconsin Women’s Issues and PIDD
Relaxation and Stress Relief This panel discussion will address concerns faced by women
In this lifestyle awareness session, you’ll learn how to living with PIDD. Key subjects include reproductive health
successfully manage stress by changing the way you respond matters and health maintenance from menarche to motherhood
to it. Healthier coping strategies and tips on making time for to menopause and beyond.
relaxation round out this helpful session. Ralph Shapiro, MD
Leslie Harman, MA Midwest Immunology Clinic
Private Practice Therapist Family Dynamics of Chronic Illness
SCID Newborn Screening Families dealing with chronic illness often face unique
Learn about the advancements in newborn screening for challenges. This insightful session will focus on family
SCID, and what it means for the primary immunodeficiency dynamics and the frustrations and rewards of having a
community. Also, find out what you can do to make progress member with a primary immunodeficiency. Strategies on
in your own state to advance this miraculous screening. how to relate to family members, find balance and create a
nurturing environment will be shared.
Rebecca Buckley, MD
Duke University School of Medicine Donna Marie Meszaros, PhD
Lawrence (Larry) LaMotte Abaris and Apex Behavioral Health Clinics
IDF Director of Public Policy Rebecca Wang, MS, LLPC
Barbara Ballard Private Practice Therapist
IDF Board of Trustees Managing Gastrointestinal Complications
Heather Smith (Repeat)
IDF Volunteer – Florida Discover different ways to monitor, diagnose, and treat G. I.
Co-founder, SCID Angels for Life Foundation issues, a condition that troubles many patients with PIDD, in
this valuable session.
10:00 AM – 5:00 PM — Exhibit Hall Open Laurence Cheng, MD
University of California – San Francisco
11:00 AM – 12:00 PM
Healthcare and Life Management Sessions 12:00 PM – 2:00 PM — Lunch
(Select one)
Health Insurance and You 2:00 PM – 3:00 PM
Learn the art and language of health insurance to better Healthcare & Life Management Sessions
communicate with private health insurance companies through (Select one)
strategies that will lead to an improved relationship and Communicating with Your Healthcare Team
prevent claim denials. Gain greater understanding of how to Was your last visit to your physician as productive as you
work with your insurance company. Additionally, participants wanted? This panel discussion concentrates on ideas of how
will learn the steps necessary to undertake the appeal/ you can prepare to make the best use of your time with your
grievance process. healthcare team and have a great clinical experience.
Linda Fallon Kristin Epland, FNP-C
IDF Patient Advocate Manager Midwest Immunology Clinic
Other Speakers TBD M. Elizabeth Younger, CPNP, PhD
School Issues Johns Hopkins Hospital
Learn how to build a strong relationship with your child’s Genetic Counseling for Families
school and get the best possible education for your child. Genetic counseling helps translate the results of genetic
Understand your school’s responsibility under federal law and testing into practical information and enable individuals
your child’s rights. and families to understand and reach informed decisions
Katherine Antilla, MAEd regarding family planning. Specific tests and issues for those
IDF Director of Education and Volunteer Programs with primary immunodeficiency diseases will be discussed.
Maggi Dodds, CPNP Joie Davis, PNP-BC, APNG
Texas Children’s Hospital National Institute of Allergy and Infectious Diseases
John Seymour, PhD, LMFT
University of Minnesota, Mankato

9


Government Assistance Programs: Medicare, 3:15 PM – 4:15 PM
Medicaid and Social Security Income Together Again! Person-to-Person
Maneuvering the maze of Medicare, Medicaid or Social Return to the original Person-to-Person group to
Security Income can be frustrating and confusing. In this check back with your peers.
session, experts will explain how to successfully tackle these Note: There is no problem if you did not attend the session on
programs and make them work for you. Thursday; you are welcome and encouraged to attend.
Speaker TBD Choose the session that best describes you:
Immunoglobulin Therapy (Repeat) • Adult Patients (50 years and up)
Learn about the benefits of immunoglobulin therapy and the Lead Presenter-Donna Marie Meszaros, PhD
role it plays for patients with PIDD. Both intravenous (IVIG) Abaris and Apex Behavioral Health Clinics
and subcutaneous (SCIG) therapies will be discussed as well • Adult Patients (30 to 49 years)
as common reactions to this life saving therapy and ways to Lead Presenter-Leslie Harman, MA
alleviate the side effects. Private Practice Therapist
Jordan Orange, MD, PhD • Young Adult Patients (19 to 29 years)
Children’s Hospital of Philadelphia Lead Presenter-Laura Guenther, LCSW
University of Illinois, Chicago
E. Richard Stiehm, MD
University of California – Los Angeles • Parents of Teens and Young Adults (16 years and up)
Lead Presenter-Jodi Talb, LCSW
Debra Sedlak, CPNP
Private Practice Social Worker
Duke University School of Medicine
• Parents of Youth (11 to 15 years)
Health Insurance and You (Repeat) Lead Presenter-John Seymour, PhD, LMFT
Learn the art and language of health insurance to better University of Minnesota, Mankato
communicate with private health insurance companies
through strategies that will lead to an improved relationship • Parents of Children (birth to 10 years)
and prevent claim denials. Gain greater understanding of Lead Presenter-Rebecca Wang, MS
how to work with your insurance company. Additionally, Private Practice Therapist
participants will learn the steps necessary to undertake the • Partners of Patients
appeal/grievance process. Lead Presenter-Jennifer Pate, MD
St. Luke’s Episcopal Hospital
Linda Fallon
IDF Patient Advocate
Other Speakers TBD 7:00 PM – 10:00 PM
Immunizations: Understanding the Risks IDF Southwestern Family Festival
The whole family will enjoy the magnificent mountain view
and Benefits and awe-inspiring grounds of the Desert Ridge Resort as we
For each of the over 150 types of PIDD, the response to
meet outside for an event that celebrates many of the wonders
vaccinations may be different. In this session, participants will
of the Southwest! Dinner, games and entertainment will
learn how vaccines work, how to know if a vaccine will help
highlight the exotic blend of Native American, Mexican and
or harm your child and the differences between live or killed
the colorful Western cultures.
vaccines.
E. Richard Stiehm, MD
University of California – Los Angeles

USIDNet National Patient Registry
The United States Immunodeficiency Network (USIDNet) is a team of leading
immunologists from across the country, who have joined together for the sole
purpose of advancing knowledge in the field of primary immunodeficiencies.
An important component of USIDNet are national patient registries to help
establish a valuable comprehensive database for researchers. Stop by the
USIDNet Registry headquarters or the USIDNet booth in the Exhibit Hall for
information on how you can participate in this important venture. For more
information please call IDF at 800.296.4433

10


Professional Medical Education Program
June 24, 2011
11:00 AM - 5:00 PM
(Pre-registration is required)

Goals Learning Objectives
To increase early diagnosis and proper treatment of • Describe the epidemiology of primary
patients with primary immunodeficiency diseases, immunodeficiency diseases and recognize the ways in
physicians need to be educated about the recognition and which patients present clinically.
disease management of primary immunodeficiencies. Since
individuals are most likely to first contact their primary care • Identify the laboratory approaches to assess humoral,
providers with symptoms, these physicians especially need cellular, and innate immune function and recognize the
to be educated about how to meet their patients’ needs current limitations of laboratory testing.
with proper diagnosis, treatments and referrals. In addition,
• Explain that primary immunodeficiency can present
immunologists, allergists and others who treat primary
with a wide variety of symptoms (infections,
immunodeficiency diseases need to be updated on matters
autoimmune/inflammatory disorders and part of a
that will lead to earlier diagnosis and appropriate treatment
syndrome complex). Recognize that Common Variable
modalities. Nurses who care for patients with primary
Immunodeficiency can present at any age and often
immunodeficiency diseases or administer immune globulin
does later in life.
replacement treatment need continuing education in order
to improve the quality of care they provide. • Report the various sources of stem cells that can be
used for immune reconstitution of patients with primary
Target Audience immunodeficiency diseases; differentiate between
the advantages and disadvantages of the various
This program is designed for immunologists, allergists, types of stem cell transplantation in various primary
nursing professionals specializing in immunology and other immunodeficiency diseases.
professionals who treat primary immunodeficiency disease.
Primary care physicians, including family practitioners • Define the various routes for the administration of
and pediatricians will benefit from the program and are immune globulin including IVIG and SCIG. Identify
encouraged to attend. and treat adverse reactions, categorize the new safety
measures and develop an IVIG or SCIG management
If you are interested in attending this program, please plan.
register on line at www.primaryimmune.org. This will reserve
your space for sessions and meal functions for Friday’s You are also welcome to register for all activities, sessions
program. Some possible topics that will be covered are: and meals functions of the IDF 2011 National Conference,
June 23-25, 2011. If you would like to register for both the
• I
mmune System Basics for Primary Immunodeficiency Professional Education Program and the IDF 2011 National
Disease (PIDD) Conference, please check the appropriate box on the
Heathcare, Government & Industry online registration form.
• Clinical Presentations and Lab tests to run for
diagnosing PIDD Pre-registration is requested, but walk-in’s will be accepted
on a first-come first-served basis. Please understand
• Therapies: Treatment of PIDD through Bone Marrow
telephone registrations cannot be accepted.
Transplantation, Immune Globulin Replacement and
Gene Therapy Pre-Registration Deadline: May 18, 2011
• Case studies for PIDD Registration Cancellation Deadline: May 31, 2011
• Co-managing PIDD Patients and Questions & Answers

11


Professional Medical Education Program, continued.
Accreditation Statement Designation Statement
This activity has been planned and implemented in Clinical Immunology Society designates this educational
accordance with the Essential Areas and Policies of the activity for a maximum of 4.5 AMA PRA Category 1
Accreditation Council for Continuing Medical Education CreditsTM. Physicians should only claim credit commensurate
(ACCME) through the joint sponsorship of the Clinical with the extent of their participation in the activity.
Immunology Society (CIS) and the Immune Deficiency
Foundation. CIS is accredited by the ACCME to provide Location
continuing medical education for physicians. JW Marriott Desert Ridge Resort and Spa
Phoenix, Arizona.

Program Agenda

11:00 am - 11:30 pm 1:30 pm - 2:40 pm
Registration Kathleen Sullivan, MD, PhD
Chief, Division of Allergy and Immunology
11:30 am - 11:40 am The Children’s Hospital of Philadelphia
Welcome and Introductions Rebecca Buckley, MD
Rebecca Buckley, MD Chair, IDF Medical Advisory Committee
Chair, IDF Medical Advisory Committee J. Buren Sidbury Professor of Pediatrics
J. Buren Sidbury Professor of Pediatrics Duke University School of Medicine
Duke University School of Medicine
Topic: Therapies- Treatment of PIDD
through Bone Marrow Transplantation,
11:40 am - 12:05 pm
Immune Globulin Replacement and Gene
Lunch and Mystery Diagnosis Video
Therapy
12:05 pm - 12:50 pm
2:40 pm - 3:05 pm
John Routes, MD
Professor of Pediatrics, Medicine, Microbiology and Break
Molecular Genetics
Medical College of Wisconsin and Children’s Hospital of
3:05 pm - 4:15 pm
John Routes, MD
Wisconsin
Professor of Pediatrics, Medicine, Microbiology and
Topic: Immune System Basics for Primary Molecular Genetics
Immunodeficiency Disease (PIDD) Medical College of Wisconsin and Children’s Hospital of
Wisconsin
12:50 pm - 1:30 pm
Topic: Case Studies II for PIDD
Francisco (Tony) Bonilla, MD, PhD
Assistant Professor, Harvard Medical School
4:15 pm - 5:00 pm
Children’s Hospital Boston and Harvard University
Panel Discussion
Topic: Case Studies I for PIDD Topic: Co-managing PIDD Patients
Questions and Answers

*Sessions and speakers subject to change

12


“When you hear
% Black
hoof beats,
think zebras,
not horses.”
TM
0% Black

In medical school, many doctors learn the saying, “when you
MS 278 hear hoof beats, think horses, not zebras” and are taught to
focus on the likeliest possibilities when making a diagnosis,
not the unusual ones. However, sometimes physicians need
to look for a zebra. Patients with primary immunodeficiency
MS 376 disease are the zebras of the medical world.

IDF announces the most spectacular campaign
to raise funds and promote awareness —
THINK ZEBRA!
It is time to earn your stripes!
Participants will receive a kit that includes zebra print bracelets to share with friends, neighbors and family members. All
you do is explain a little about primary immunodeficiency diseases with those around you (don’t worry, we will give you
information cards) and ask for a donation to help raise awareness. All THINK ZEBRA! donors will be recognized at the
National Conference. What better way to raise funds and awareness of primary immunodeficiency diseases, while helping
to save lives! Money raised will help fund patient and physician education and awareness.

IDF cannot succeed without your help! Donors who support IDF will be recognized
at the National Conference.
Imagine if each family at the National Conference successfully raises $1,000 for IDF! We challenge you to raise as
much as you can. Gifts at all levels are greatly appreciated and ALL participants, no matter how much they raise, will be
recognized.
• Every individual or family that raises $2,500 for IDF by Friday, June 24, 2011, will be reimbursed their
registration fees.
• Every individual or family that raises any money for IDF by Friday, June 24, 2011, will automatically be entered in a
raffle to win fabulous prizes.
• The individual or family that raises the most money for IDF by Friday, June 24, 2011 will also receive a special prize.
Watch your mailbox in March for a packet that will contain everything you need to get started.

Although we hope you will support THINK ZEBRA!, we realize everyone’s financial circumstances are different and we
hope you will make a gift at whatever level you feel comfortable.

Don’t forget the Silent Auction on Friday night! To donate an auction item, call IDF at 800.296.4433

40 W. Chesapeake Ave. Suite 308
Towson, MD 21204

Join Us and Celebrate 30 Years!

IDF-1110-039

IDF 2011 National Conference Brochure

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