IDF 2011 National Conference Brochure

Registration Information

Immune Deficiency Foundation Immune Deficiency Foundation

Immune Deficiency Foundation

2011 National Conference Sponsors Legacy Sponsors

Baxter Healthcare CSL Behring

Talecris Biotherapeutics

Silver SponsorsGrifols

IgG America/ASD Healthcare/US Bioservices

Table of ContentsSupporters ....................................................................................... 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

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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.

SponsoredbyCSLBehring

• 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!

SponsoredbyTalecrisBiotherapeutics

• 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.

SponsoredbyBaxterHealthcare

• 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 StatementThe 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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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.

Registration Information

Questions? Call the IDF National Conference Office at 414.918.3022 or email [email protected]

Early RegistrationOn or before April 8, 2011

Regular RegistrationApril 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

Childcare (ages 6 months - 4 years)On-site childcare during the conference is available for children at the JW Marriott Desert Ridge Resort and Spa on a first-come/first-served basis. Registered conference attendees can use this service provided by Kiddie Corp, an organization that provides high quality children and youth services for special events and conferences.

Kid’s Club (ages 5 - 9 years)‘Tween Scene (ages 10 - 12 years)Teen Program (ages 13 - 18 years)Youth are encouraged to participate in the IDF 2011 National Conference Youth Programs. Fun, age-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 Science Center is planned for Friday afternoon.

NOTE:Ifyouareinterestedinhavingyourchildparticipateinanyoftheyouthprogramsduringtheconference,pleaseindicatesoontheonlineregistrationform.YouwillalsoneedtofilloutaKiddieCorpregistrationform.

Youth Programs will be available:

Thursday, June 23, 2011 8:00 AM to 7:00 PMFriday, June 24, 2011 7:00 AM to 10:00 PMSaturday, June 25, 2011 7:00 AM to 7:00 PM

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.

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AccomodationsAll sessions and events for the IDF 2011 National Conference will be held at the JW Marriott Desert Ridge Resort and Spa in Phoenix, Arizona.

JW Marriott Desert Ridge Resort and Spa

www.jwdesertridgeresort.com

Inspired by the majesty of the Grand Canyon, Desert Ridge is synonymous with serenity and relaxation. Set on 316 acres in the Sonoran Desert, this award-winning destination encourages leisure, calms the senses and conversely, offers a wide choice of activities ensuring a fun time for the whole family. When you’re not attending seminars facilitated by top immunologists, participating in life management sessions or networking with peers, you’ll enjoy luxurious spa treatments, refreshing recreational activities, stunning sunsets, and magnificent mountain views.

Desert Ridge also features four acres of cool, sparkling 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 Lazy River and Serpentine Slide.

Desert Ridge offers two 18-hole championship golf courses. A 25% discount is available for the Revive Spa and for golf services during your stay. Please mention that you are with IDF when you book these services and the discount 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.

Hotel Room Reservations Room reservations are available for the conference nights (Wednesday, June 22 - Saturday, June 25) at a group room rate of $189 + tax for all rooms at the JW Marriott Desert Ridge Resort and Spa. Maximum capacity is 5 people per 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 available for these dates at the hotel standard rate.

In order to assure your guest room is booked for the IDF 2011 National Conference you must make your reservations prior to May 31, 2011. Online reservations are available by going to www.primaryimmune.org and clicking on IDF 2011 National Conference where there is a link for all Marriott reservations. If you wish, you can call 800.266.9432 and tell the reservation agent that you are with the Immune Deficiency Foundation 2011 National Conference and your reduced rate will go into effect. A major credit card is required to guarantee and hold your reservation. Your credit card will be charged one room night when your reservation is made.

Ticketed Events A select number of conference events and sessions require advance registration. These events are noted with a on the registration form. There are a limited number of seats available during these events. It is important that you indicate the number of people who will be attending each session (including yourself) on the registration form. You will receive a personal itinerary and tickets in your registration packets. Access will be denied to these events if you do not have a ticket. Please note, there is no additional charge for ticketed events.

Name BadgesAll National Conference attendees will receive a name badge with their registration packet. These badges should be worn at all times inside the hotel or on the youth off-site trip. Badges will be used to control access to various sessions and activities.

Conference AttireAll sessions other than the Friday night event are casual attire. All conference session will be held in the hotel meeting rooms, which are air-conditioned. However, please remember, everyone has their own personal preferences for temperature and it is often difficult to control temperatures in a hotel setting. It is recommended to bring along a light jacket or sweater to the session rooms.

Dress for the Friday night 30th Anniversary Celebration event is festive - with a touch of zebra - if you wish!

Conference EtiquettePlease be considerate of others during all educational sessions and turn off all cell phones and pagers or set them to vibrate. Please arrive on time or early for the sessions you plan to attend, allowing time to add extra chairs if necessary.

Conference Information

Reel StoriesOffer encouragement and inspiration to others by visiting Studio IDF and record your story for the “Reel Stories” channel on the IDF Website. Times TBD.

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ScholarshipsA limited number of partial scholarships are available based on financial need and are provided on a first-come, first-served basis. If you are interested in a partial scholarship that will cover your hotel costs only (June 23, 24 and 25), please complete the “Scholarship Application” section on the online registration form. You will be asked to upload a letter (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.

If you are not able to register online, you will need to complete a registration form and send it with the letter to apply to Immune Deficiency Foundation, Attn: IDF 2011 National Conference Scholarship, 40 West Chesapeake Ave. Suite 308, Towson, MD 21204.

The deadline for scholarship applications is April 8, 2011

Pleasenote,registrationandtravelcostsarenotincludedinthepartialscholarship.Duetothelimitednumberofscholarshipsavailable,preferencewillbegiventofirst-timeconferenceattendees.


Additional scholarships are available from the IDF SCID Initiative and the Arlen Sprague Memorial Scholarship.

Special Accessibility NeedsIf you require special arrangements in order to fully participate in the conference, please contact the IDF National Conference Office at 414.918.3022.

Cancellation PolicyIf 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.

No Smoking PolicyMarriott is committed to providing its guests and associates with a smoke-free environment, and is proud to boast one of the most comprehensive smoke-free hotel policies in the industry. Although smoking is not permitted within hotel buildings themselves, guests who smoke are permitted to do so outside in designated areas.

TransportationSuper Shuttle - Approximate fare: $22 per person (one way)(Reservations are required by calling 877.300.4826)

Airport shuttle service - Approximate fare: $60 (one way)

Taxi - Approximate fare: $60 (one way)

Hertz Car Rental (onsite at JW Marriott Desert Ridge) 480.538.5480

Driving DirectionsFrom Phoenix Sky Harbor International Airport - PHX (Approximately 19 miles)

Driving Directions: Take 24th Street Exit from Phoenix Sky Harbor International Airport and follow signs to 51 North; 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. Turn right at Deer Valley Road. Turn left at Marriott Drive.

Exhibit HallBe 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, 201110:30 AM – 5:30 PM

Saturday, June 25, 201110:00 AM – 5:00 PM

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Sessions And ActivitiesPresenters and presentation times are subject to changes and updates. Admission to all educational sessions, special events and meals is included in your registration fee.

THURSDAY, JUNE 23, 2011

EARLY MORNINGIf you would like to participate in an IDF Golf Outing, please call IDF for more information at 800.296.4433.

8:00 AM – 9:00 PMRegistration / Information Desk Open

8:30 AM – 5:00 PMADA-SCID Education ProgramThroughout this day long program, families affected by ADA-SCID will benefit from the rare opportunity to share experiences and present concerns to experts in ADA-SCID, Bone Marrow Transplantation (BMT) and Genetics.

Topics Include:• History of the Disease• What does ADA Do?• Typical Clinical Presentation and Diagnosis• Neurological and Psychosocial Issues• Other Non-immunological Complications• HCT-Hematopoietic Cell Transplantation• PEG-ADA Therapy• ADA-SCID RegistriesSpeakers:Fabio Candotti, MDNationalInstituteofAllergyandInfectiousDiseasesBobby Gaspar, MD, PhD CentreforPaediatricPrimaryImmunodefiency-London,EnglandMike Hershfield, MDDukeUniversitySchoolofMedicineRochelle Hirschhorn, MDNewYorkUniversityAlessandro Aiuti, MD, PhDSanRaffaeleTelethonInstituteforGeneTherapy-Milan,ItalyMort Cowan, MDUniversityofCalifornia-SanFranciscoDon Kohn, MDUniversityofCalifornia-LosAngelesChildcarewillbeavailableforthisprogramFor more information please call IDF at 800.296.4433We will continue this program with a ADA-SCID Family Discussion on Friday at 10:30 am. Other sessions of interest will be offered during the day on Friday and Saturday.

2:00 PM – 2:45 PMIntroduction to Primary ImmunodeficiencyInvaluable to understanding of the immune system and primary immunodeficiency diseases, this session is open to all conference attendees, but encouraged as a “must” for newly diagnosed patients, family members and first time conference attendees!

Howard Lederman, MD, PhDJohnsHopkinsHospitalM. Elizabeth Younger, CPNP, PhDJohnsHopkinsHospital

2:45 PM – 3:30 PMIDF Electronic Personal Health Record (EPHR)Let technology work for you! IDF’s new web-based patient resource, the EPHR was designed for patients and family members living with PIDD. Learn how this user-friendly tool can simplify your record keeping and your family’s healthcare.

Debra AdlisIDFChiefFinancialOfficerSusan ManleyIDFVolunteer-Illinois

4:00 PM – 5:15 PMMaking Connections - Person to Person The power of community! Meet people like yourself who share similar situations living with a primary immunodeficiency disease and learn from their personal experiences and knowledge. Then share a few ideas yourself! What you know might make a big difference in someone’s life!

Please register for the group that best describes you:• Adult Patients (50 years and up) Lead Presenter-Donna Marie Meszaros, PhD AbarisandApexBehavioralHealthClinics

• Adult Patients (30 to 49 years) Lead Presenter-Leslie Harman, MA PrivatePracticeTherapist

• Young Adult Patients (19 to 29 years) Lead Presenter-Laura Guenther, LCSW UniversityofIllinois,Chicago

• Parents of Teens and Young Adults (16 years and up) Lead Presenter-Jodi Talb, LCSW PrivatePracticeSocialWorker

• Parents of Youth (11 to 15 years) Lead Presenter-John Seymour, PhD, LMFT UniversityofMinnesota,Mankato

• Parents of Children (birth to 10 years) Lead Presenter-Rebecca Wang, MS PrivatePracticeTherapist

• Partners of Patients Lead Presenter-Jennifer Pate, MD St.Luke’sEpiscopalHospital

5:15 PM – 6:30 PMWelcome to the Wild, Wild, West! An IDF Welcome…It’s More Grand than the Canyon! Join the IDF for drinks, appetizers and entertainment as we renew old friendships, meet new acquaintances at our celebration of thirty years of advocacy, education and research! Gather in the Grand Canyon Ballroom and meet conference presenters, industry representatives, IDF volunteers, board members and staff. Childcare is available for those 6 months to 12 years.


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FRIDAY, JUNE 24, 2011


7:00 AM – 5:30 PMChildcare, Youth and Teen Programs

8:00 AM – 9:00 AMContinental Breakfast

7:30 AM – 9:00 AMBreakfast Symposium Primary Immunodeficiencies: What’s on the HorizonYou will want to register early for this chance to hear experts discuss cutting-edge medical treatments, pioneering gene therapy advancements, life-saving bone marrow transplantation potential, newborn screening progress and more. Space is limited to a first-come first-served basis. A buffet breakfast will be served.


Hans Ochs, MD (Moderator)UniversityofWashingtonSchoolofMedicineRebecca Buckley, MDDukeUniversitySchoolofMedicineCharlotte Cunningham-Rundles, MD, PhDMt.SinaiSchoolofMedicineAdrian Thrasher, MBBS, PhD, MRCPHInstituteofChildHealth–London,England

9:15 AM – 10:15 AMOpening SessionIDF: 30 years of Advocacy, Education and Research and more!

Marcia BoyleIDFPresident&FounderGuestSpeakersTBDSponsoredbyTalecrisBiotherapeutics

10:30 AM – 12:30 PM Specific Primary Immunodeficiency Disease Sessions (Select one)Offering a wealth of information, individuals and family members affected by a particular PIDD will gain better understanding of their specific disease, treatment options, research advances and management of associated complications and basic care in these sessions.

ADA-SCID Family DiscussionBobby Gaspar, MD, PhDCentreforPaediatricPrimaryImmunodeficiency-Lnodon,EnglandMichael Hershfield, MDDukeUniversitySchoolofMedicineRochelle Hirschhorn, MDNewYorkUniversity

Common Variable Immune DeficiencyCharlotte Cunningham-Rundles, MD, PhDMt.SinaiSchoolofMedicine

DiGeorge SyndromeKathleen Sullivan, MD, PhDChildren’sHospitalofPhiladelphia

Hereditary Angioedema and Complement DeficiencyMichael Frank, MD DukeUniversitySchoolofMedicine

Hyper IgE SyndromeAlexandra Freeman, MDNationalInstituteofAllergyandInfectiousDiseases

Hyper IgM Syndrome Ramsay Fuleihan, MDNorthwesternUniversity–FeinbergSchoolofMedicine

IgG Subclass Deficiency and Specific Antibody DeficiencyFrancisco (Tony) Bonilla, MD, PhDChildren’sHospitalBostonTerry Harville, MD, PhDUniversityofArkansasforMedicalSciences

Selective IgA DeficiencyLyman Yel, MD UniversityofCalifornia-IrvineJoseph Roberts, MD, PhDDukeUniversitySchoolofMedicine

X-linked AgammaglobulinemiaMary Ellen Conley, MDSt.JudeChildren’sResearchHospital

10:30 AM – 1:30 PMChronic Granulomotous DiseaseSteven Holland, MDNationalInstituteofAllergyandInfectiousDiseasesHarry Malech, MDNationalInstituteofAllergyandInfectiousDiseasesReinhard Seger, MDUniversityChildren’sHospital–Zurich,Switzerland

Severe Combined Immunodeficiency and Combined Immune DeficiencyAlessandro Auiti, MD, PhDSanRaffaeleTelethonInstituteforGeneTherapy-Milan,ItalyRebecca Buckley, MDDukeUniversitySchoolofMedicineJavier Chinen, MDTexasChildren’sHospitalMort Cowan, MDUniversityofCalifornia–SanFranciscoJennifer Puck, MDUniversityofCalifornia–SanFranciscoAdrian Thrasher, MBBS, PhD, MRCPHInstituteofChildHealth–London,England

10:30 AM – 2:30 PMNEMO Laurence Cheng, MDUniversityofCalifornia–SanFrancisco

Sessions and Activities, continued.

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Erwin Gelfand, MDNationalJewishHospitalJordan Orange, MD, PhDChildren’sHospitalofPhiladelphiaSung-Yun Pai, MDChildren’sHospitalBoston

Wiskott-Aldrich SyndromeAlessandro Auiti, MD, PhDSanRaffaeleTelethonInstituteForGeneTherapy-Milan,ItalyJames Bussel, MDWeillCornellMedicalCollegeFabio Candotti, MDNationalInstituteofAllergyandInfectiousDiseasesAlexandra Filipovich, MDCincinnatiChildren’sHospitalHans Ochs, MDUniversityofWashingtonSchoolofMedicineAdrian Thrasher, MBBS, PhD, MRCPHInstituteofChildHealth–London,England

10:30 AM – 5:30 PM — Exhibit Hall Open

12:30 PM – 2:30 PM — Lunch

2:45 PM – 3:45 PMHealthcare & Life Management Sessions (Select one)Update your personal understanding with in-depth information about specific issues related to primary immunodeficiency diseases and learn more about their management.

Understanding Antibiotic and Antifungal Therapy Learn what goes into the treatment decisions your physician makes

when it comes to prescribing antibiotic and antifungal therapy.

Jennifer Puck, MDUniversityofCalifornia–SanFrancisco

Insight Into Immunological Testing Laboratory studies are essential to evaluate the immune

system to determine the presence of PIDD. Gain knowledge on basic approaches in the lab, categories of tests, and how to better understand the tests and their results.

Howard Lederman, MD, PhDJohnsHopkinsHospitalM. Elizabeth Younger, CPNP, PhDJohnsHopkinsHospital

The Relationship Between Autoimmunity and Immunodeficiency

Although it may seem illogical, PIDD is frequently complicated by autoimmune conditions and these conditions can pose significant challenges to patients. Learn about the insights into how immunodeficiencies can predispose to autoimmunity.

James Bussell, MDWeillCornellMedicalCollege

Overview of Gene Therapy and Bone Marrow Transplantation

Showing great promise for treatment success, these therapies are still mysterious to many. Attend this introductory overview

to gain insight of what these therapies offer and learn about their future prospects.

Rebecca Buckley, MDDukeUniversitySchoolofMedicineMort Cowan, MDUniversityofCalifornia–SanFranciscoDon Kohn, MDUniversityofCalifornia–LosAngelesAlessandro Auiti, MD, PhDSanRaffaeleTelethonInstituteForGeneTherapy-Milan,Italy

Dealing with Depression Everyone feels sad or blue at times, but when it won’t go

away, it might be depression. Learn the causes, signs and symptoms, treatments and outcomes of depression, and what it may mean to you.

Jennifer Pate, MDSt.LukesEpiscopalHospital

The Connection Between Chronic Sinusitis and Primary Immunodeficiency Diseases

Are you one of the many patients with PIDD who lives with chronic sinusitis? Learn how to manage this condition in a session that offers a wealth of information about one of the most common health complaints leading to an office visit in the U.S.

Ralph Shapiro, MDMidwestImmunologyClinic

4:00 PM – 5:00 PMHealthcare & Life Management Sessions (Select one)

The Relationship Between Autoimmunity and Primary Immunodeficiency (Repeat)

Although it may seem illogical, PIDD is frequently complicated by autoimmune conditions and these conditions can pose significant challenges to patients. Learn about the insights into how immunodeficiencies can predispose to autoimmunity.

James Bussel, MDWeillCornellMedicalCollege

Understanding Antibiotic and Antifungal Therapy (Repeat)

Learn what goes into the treatment decisions your physician makes when it comes to prescribing antibiotic and antifungal therapy.

Jennifer Puck, MDUniversityofCalifornia–SanFrancisco

The Connection Between Chronic Sinusitis and Primary Immunodeficiency Diseases (Repeat)

Are you one of the many patients with PIDD who lives with chronic sinusitis? Learn how to manage this condition in a session that’s a wealth of information about one of the most common health complaints leading to an office visit in the U.S.


Nutrition While good dietary habits are important for everyone, they

are extremely critical for the patient with PIDD. In a nation where we are constantly reminded to “eat this, not that,” learn about a balanced diet and adequate nutrition from an expert.

Speaker TBD


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Sessions and Activities, continued.Immunoglobulin: Safeguards of the Collection and Manufacturing Processes

Many patients with PIDD rely on immunoglobulin, the therapy made from plasma collected from committed and qualified donors. Hear about this unique process, beginning with the plasma donor, through manufacturing and final distribution to patients. You will be amazed at the complexities and safeguards involved with creating Ig. Discover how you can make a difference by visiting a plasma center.

Jan Bult, President and CEOPlasmaProteinTherapeuticsAssociationKatherine Antilla, MAEdIDFDirectorofEducation&VolunteerDevelopment

5:00 PM – 7:00 PMIDF THINK ZEBRA! Silent AuctionPlease join us for a very special Silent Auction Friday night. Bid on treasures, including autographed memorabilia, jewelry, crafts, a vast selection of unique baskets, and other goodies. Bid early and often!

If you’d like to donate an auction item, please call IDF at 800.296.4433

6:30 PM – 9:30 PMHappy 30th Anniversary IDF! Adult Dinner and Awards Enjoy yourself as we celebrate three decades of advocacy, education and research in the primary immunodeficiency community! Join in the festivities with entertainment, dinner, awards and a fabulous silent auction. It’s time to party!

Dress for the anniversary celebration event is festive, with a touch of zebra, if you wish.


Note:Thiseventisforadultsonly.Allyouthages18yearsandyoungershouldattendoneoftheyouthprogramdinnerevents.YoumustregisteryourchildfortheYouthProgramtoattend.

6:00 PM – 10:00 PMHappy Birthday IDF!Childcare, Kids Club, ‘Tween Scene Celebration Dinner Who knows how to celebrate a birthday as well as a kid? This fun, kid-friendly night of dinner followed by an evening of games, activities and entertaining videos is open to all children and youth 6 months to 12 years old. (Participants must be registered for one of the Youth Program to participate in this event).

6:00 PM – 10:00 PMC-E-L-E-B-R-A-T-E Teen Dinner Targeted specifically for teens and designed for a great time, this party promises an evening of teen-friendly food, games, activities and a movie. Guaranteed to keep enthusiasm high! (Participants must be registered in the Teen program to participate in this event).

SATURDAY, JUNE 25, 2011


7:00 AM – 5:00 PMChildcare, Youth Program and Teen Program

8:00 AM – 9:00 AMContinental Breakfast

8:00 AM – 9:30 AMBreakfast Symposium Health Care Reform: What it Means to Our CommunityAs public opinion remains divided about health care reform, the majority of Americans can agree on one thing: they’re confused. If you wonder how reform affects your family and you, this breakfast symposium is not to be missed. A panel of experts will also help decipher some of IDF’s key public issues that affect members of the primary immunodeficiency community.

Interested participants are encouraged to register early. Space and availability are limited and will be determined on a first-come, first-served basis. A buffet breakfast will be served.


Lawrence (Larry) LaMotte Julie BirkoferIDFDirectorofPublicPolicy PlasmaProteinTherapeuticsAssociationSue RamthunHartHealthStrategies

9:45 AM – 10:45 AMHealthcare & Life Management Sessions

Managing Gastrointestinal Complications Discover different ways to monitor, diagnose, and treat GI

issues, a condition that troubles many patients with PIDD, in this valuable session.

Laurence Cheng, MDUniversityofCalifornia–SanFrancisco

Growth and Development of Children with PIDD Find out why the growth and development is affected in some

children with PIDD and services to help you and your child.

Terry Harville, MD, PhDUniversityofArkansasforMedicalSciences

Immunoglobulin Therapy Learn about the benefits of immunoglobulin therapy and the

role it plays for patients with PIDD. Both intravenous (IVIG) and subcutaneous (SCIG) therapies will be discussed as well as common reactions to this life saving therapy and ways to alleviate the side effects.

Jordan Orange, MD, PhDChildren’sHospitalofPhiladelphiaE. Richard Stiehm, MDUniversityofCalifornia–LosAngelesDebra Sedlak, CPNPDukeUniversitySchoolofMedicine

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Dealing with Lung Disease According to a 2008 IDF patient survey, nearly two out of five

patients with PIDD reported permanent impairment of lung function prior to diagnosis. Discover ways to help relieve the symptoms and prevent complications.

John Routes, MDMedicalCollegeofWisconsin

Relaxation and Stress Relief In this lifestyle awareness session, you’ll learn how to

successfully manage stress by changing the way you respond to it. Healthier coping strategies and tips on making time for relaxation round out this helpful session.

Leslie Harman, MAPrivatePracticeTherapist

SCID Newborn Screening Learn about the advancements in newborn screening for

SCID, and what it means for the primary immunodeficiency community. Also, find out what you can do to make progress in your own state to advance this miraculous screening.

Rebecca Buckley, MDDukeUniversitySchoolofMedicineLawrence (Larry) LaMotteIDFDirectorofPublicPolicyBarbara BallardIDFBoardofTrusteesHeather SmithIDFVolunteer–FloridaCo-founder,SCIDAngelsforLifeFoundation

10:00 AM – 5:00 PM — Exhibit Hall Open

11:00 AM – 12:00 PM Healthcare and Life Management Sessions (Select one)

Health Insurance and You Learn the art and language of health insurance to better

communicate with private health insurance companies through strategies that will lead to an improved relationship and prevent claim denials. Gain greater understanding of how to work with your insurance company. Additionally, participants will learn the steps necessary to undertake the appeal/grievance process.

Linda FallonIDFPatientAdvocateManagerOtherSpeakersTBD

School Issues Learn how to build a strong relationship with your child’s

school and get the best possible education for your child. Understand your school’s responsibility under federal law and your child’s rights.

Katherine Antilla, MAEdIDFDirectorofEducationandVolunteerProgramsMaggi Dodds, CPNPTexasChildren’sHospitalJohn Seymour, PhD, LMFTUniversityofMinnesota,Mankato

Employment Issues Learn about your rights in the workplace. Gain knowledge

about the Family & Medical Leave Act (FMLA), the Americans with Disabilities Act (ADA) and discuss disclosure issues.

Allison NicholDepartmentofJustice

Women’s Issues and PIDD This panel discussion will address concerns faced by women

living with PIDD. Key subjects include reproductive health matters and health maintenance from menarche to motherhood to menopause and beyond.


Family Dynamics of Chronic Illness Families dealing with chronic illness often face unique

challenges. This insightful session will focus on family dynamics and the frustrations and rewards of having a member with a primary immunodeficiency. Strategies on how to relate to family members, find balance and create a nurturing environment will be shared.

Donna Marie Meszaros, PhDAbarisandApexBehavioralHealthClinicsRebecca Wang, MS, LLPCPrivatePracticeTherapist

Managing Gastrointestinal Complications (Repeat)

Discover different ways to monitor, diagnose, and treat G. I. issues, a condition that troubles many patients with PIDD, in this valuable session.

Laurence Cheng, MDUniversityofCalifornia–SanFrancisco

12:00 PM – 2:00 PM — Lunch

2:00 PM – 3:00 PMHealthcare & Life Management Sessions (Select one)

Communicating with Your Healthcare Team Was your last visit to your physician as productive as you

wanted? This panel discussion concentrates on ideas of how you can prepare to make the best use of your time with your healthcare team and have a great clinical experience.

Kristin Epland, FNP-CMidwestImmunologyClinicM. Elizabeth Younger, CPNP, PhDJohnsHopkinsHospital

Genetic Counseling for Families Genetic counseling helps translate the results of genetic

testing into practical information and enable individuals and families to understand and reach informed decisions regarding family planning. Specific tests and issues for those with primary immunodeficiency diseases will be discussed.

Joie Davis, PNP-BC, APNGNationalInstituteofAllergyandInfectiousDiseases


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Government Assistance Programs: Medicare, Medicaid and Social Security Income

Maneuvering the maze of Medicare, Medicaid or Social Security Income can be frustrating and confusing. In this session, experts will explain how to successfully tackle these programs and make them work for you.

Speaker TBD

Immunoglobulin Therapy (Repeat) Learn about the benefits of immunoglobulin therapy and the

role it plays for patients with PIDD. Both intravenous (IVIG) and subcutaneous (SCIG) therapies will be discussed as well as common reactions to this life saving therapy and ways to alleviate the side effects.

Jordan Orange, MD, PhDChildren’sHospitalofPhiladelphiaE. Richard Stiehm, MDUniversityofCalifornia–LosAngelesDebra Sedlak, CPNPDukeUniversitySchoolofMedicine

Health Insurance and You (Repeat) Learn the art and language of health insurance to better

communicate with private health insurance companies through strategies that will lead to an improved relationship and prevent claim denials. Gain greater understanding of how to work with your insurance company. Additionally, participants will learn the steps necessary to undertake the appeal/grievance process.

Linda FallonIDFPatientAdvocateOtherSpeakersTBD

Immunizations: Understanding the Risks and Benefits

For each of the over 150 types of PIDD, the response to vaccinations may be different. In this session, participants will learn how vaccines work, how to know if a vaccine will help or harm your child and the differences between live or killed vaccines.

E. Richard Stiehm, MDUniversityofCalifornia–LosAngeles

3:15 PM – 4:15 PMTogether Again! Person-to-Person Return to the original Person-to-Person group to check back with your peers. Note:ThereisnoproblemifyoudidnotattendthesessiononThursday;youarewelcomeandencouragedtoattend.

Choose the session that best describes you: • Adult Patients (50 years and up)

Lead Presenter-Donna Marie Meszaros, PhD AbarisandApexBehavioralHealthClinics

• Adult Patients (30 to 49 years) Lead Presenter-Leslie Harman, MA PrivatePracticeTherapist

• Young Adult Patients (19 to 29 years) Lead Presenter-Laura Guenther, LCSW UniversityofIllinois,Chicago

• Parents of Teens and Young Adults (16 years and up) Lead Presenter-Jodi Talb, LCSW PrivatePracticeSocialWorker

• Parents of Youth (11 to 15 years) Lead Presenter-John Seymour, PhD, LMFT UniversityofMinnesota,Mankato

• Parents of Children (birth to 10 years) Lead Presenter-Rebecca Wang, MS PrivatePracticeTherapist

• Partners of Patients Lead Presenter-Jennifer Pate, MD St.Luke’sEpiscopalHospital

7:00 PM – 10:00 PMIDF Southwestern Family Festival The whole family will enjoy the magnificent mountain view and awe-inspiring grounds of the Desert Ridge Resort as we meet outside for an event 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.



USIDNet National Patient RegistryThe 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

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June 24, 201111:00 AM - 5:00 PM (Pre-registration is required)

Goals

To increase early diagnosis and proper treatment of patients with primary immunodeficiency diseases, physicians need to be educated about the recognition and disease management of primary immunodeficiencies. Since individuals are most likely to first contact their primary care providers with symptoms, these physicians especially need to be educated about how to meet their patients’ needs with proper diagnosis, treatments and referrals. In addition, immunologists, allergists and others who treat primary immunodeficiency diseases need to be updated on matters that will lead to earlier diagnosis and appropriate treatment modalities. Nurses who care for patients with primary immunodeficiency diseases or administer immune globulin replacement treatment need continuing education in order to improve the quality of care they provide.

Target Audience

This program is designed for immunologists, allergists, nursing professionals specializing in immunology and other professionals who treat primary immunodeficiency disease. Primary care physicians, including family practitioners and pediatricians will benefit from the program and are encouraged to attend.

If you are interested in attending this program, please register on line at www.primaryimmune.org. This will reserve your space for sessions and meal functions for Friday’s program. Some possible topics that will be covered are:

• Immune System Basics for Primary Immunodeficiency Disease (PIDD)

• Clinical Presentations and Lab tests to run for diagnosing PIDD

• Therapies: Treatment of PIDD through Bone Marrow Transplantation, Immune Globulin Replacement and Gene Therapy

• Case studies for PIDD

• Co-managing PIDD Patients and Questions & Answers

Learning Objectives

• Describe the epidemiology of primary immunodeficiency diseases and recognize the ways in which patients present clinically.

• Identify the laboratory approaches to assess humoral, cellular, and innate immune function and recognize the current limitations of laboratory testing.

• Explain that primary immunodeficiency can present with a wide variety of symptoms (infections, autoimmune/inflammatory disorders and part of a syndrome complex). Recognize that Common Variable Immunodeficiency can present at any age and often does later in life.

• Report the various sources of stem cells that can be used for immune reconstitution of patients with primary immunodeficiency diseases; differentiate between the advantages and disadvantages of the various types of stem cell transplantation in various primary immunodeficiency diseases.

• Define the various routes for the administration of immune globulin including IVIG and SCIG. Identify and treat adverse reactions, categorize the new safety measures and develop an IVIG or SCIG management plan.

You are also welcome to register for all activities, sessions and meals functions of the IDF 2011 National Conference, June 23-25, 2011. If you would like to register for both the Professional Education Program and the IDF 2011 National Conference, please check the appropriate box on the Heathcare, Government & Industry online registration form.

Pre-registration is requested, but walk-in’s will be accepted on a first-come first-served basis. Please understand telephone registrations cannot be accepted.

Pre-Registration Deadline: May 18, 2011

Registration Cancellation Deadline: May 31, 2011

Professional Medical Education Program

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Accreditation StatementThis activity has been planned and implemented in accordance with the Essential Areas and Policies of the Accreditation Council for Continuing Medical Education (ACCME) through the joint sponsorship of the Clinical Immunology Society (CIS) and the Immune Deficiency Foundation. CIS is accredited by the ACCME to provide continuing medical education for physicians.

Professional Medical Education Program, continued.Designation StatementClinical Immunology Society designates this educational activity for a maximum of 4.5 AMA PRA Category 1 CreditsTM. Physicians should only claim credit commensurate with the extent of their participation in the activity.

LocationJW Marriott Desert Ridge Resort and Spa Phoenix, Arizona.

11:00 am - 11:30 pmRegistration

11:30 am - 11:40 amWelcome and IntroductionsRebecca Buckley, MDChair,IDFMedicalAdvisoryCommitteeJ.BurenSidburyProfessorofPediatricsDukeUniversitySchoolofMedicine

11:40 am - 12:05 pm Lunch and Mystery Diagnosis Video

12:05 pm - 12:50 pm John Routes, MDProfessorofPediatrics,Medicine,MicrobiologyandMolecularGeneticsMedicalCollegeofWisconsinandChildren’sHospitalofWisconsin

Topic: Immune System Basics for Primary Immunodeficiency Disease (PIDD)

12:50 pm - 1:30 pm Francisco (Tony) Bonilla, MD, PhDAssistantProfessor,HarvardMedicalSchoolChildren’sHospitalBostonandHarvardUniversity

Topic: Case Studies I for PIDD

1:30 pm - 2:40 pmKathleen Sullivan, MD, PhDChief,DivisionofAllergyandImmunologyTheChildren’sHospitalofPhiladelphiaRebecca Buckley, MDChair,IDFMedicalAdvisoryCommitteeJ.BurenSidburyProfessorofPediatricsDukeUniversitySchoolofMedicine

Topic: Therapies- Treatment of PIDD through Bone Marrow Transplantation, Immune Globulin Replacement and Gene Therapy

2:40 pm - 3:05 pm Break

3:05 pm - 4:15 pm John Routes, MDProfessorofPediatrics,Medicine,MicrobiologyandMolecularGeneticsMedicalCollegeofWisconsinandChildren’sHospitalofWisconsin

Topic: Case Studies II for PIDD

4:15 pm - 5:00 pm Panel DiscussionTopic: Co-managing PIDD Patients Questions and Answers

*Sessions and speakers subject to change

Program Agenda


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

TM60% Black

60% Black

PMS 278

PMS 376

“When you hear hoof beats,

think zebras, not horses.”

In medical school, many doctors learn the saying, “when you 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 disease are the zebras of the medical world.

Immune Deficiency Foundation40 W. Chesapeake Ave. Suite 308Towson, MD 21204

Join Us and Celebrate 30 Years!

IDF-1110-039

Documents

IDF 2011 National Conference Brochure