National Primary ImmunodeficiencyAwareness Week occurs during the thirdweek in April each year. In keeping withthe mission of the Immune DeficiencyFoundation (IDF), the organization lever-ages this designation to increase awarenessamong varied audiences nationwide. Thefully integrated 2004 campaign includedelements to promote education, advocacyand fund-raising efforts for research. IDFachieved its goal for the week – to conductactivities that increase the strength andreach of IDF and awareness of primaryimmune deficiency diseases. Specifically,IDF sought to reach new individual, health-care provider and legislative audiences.Additionally, IDF educated the generalpublic about these rare disorders and invit-ed the primary immune deficiency diseasecommunity and others to raise financialsupport for IDF programs and research.

IDF Convenes First-ever ConsensusMeeting to Develop Clinical CareGuidelines to Improve Health Outcomes

Last year’s landmark study by theImmune Deficiency Foundation foundthat people affected by primaryimmune deficiency diseases often goundetected and untreated, for manyyears. Meanwhile, many individualsaffected by these rare disorders may sufferrepeated serious infections and pneumonias that can lead to long-termirreversible health consequences. Inresponse to the problem, the IDF, in itsleadership role, convened for the first-time a consensus meeting of NorthAmerica’s foremost immunologists toaddress the lack of awareness about primary immune deficiency diseases,delayed diagnoses and inconsistent

T H E N A T I O N A L N E W S L E T T E R O F T H E I M M U N E D E F I C I E N C Y F O U N D A T I O N

SPRING 2004 NUMBER 47

PI AwarenessWeek Activities

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CaregivingStrategies

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Pick The NextConference Theme

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IDF WeekendFamily RetreatsPennsylvania

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This Newsletter is sponsored byan educational grant from BayerHealthcare

IDF Advocacy atWork for You

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continued on page 2

National Celebration ElevatesUnderstanding and Awareness:IDF Launches First Fully Integrated PrimaryImmunodeficiency Awareness Week Campaign

Conference ThemeContest

Do you have a creative theme for the 2005 National Conference at Disney’sContemporary Resort? The contest winner will receive free registration and housing for conference nights. Submit theme ideas by August 31, 2004 to Phyllis Shocket at IDF via mail or email to ps@primaryimmune.org.

V ICE PRES IDENT, MARKET INGA N D C O M M U N I C AT I O N SCandace Steele, M.B.A.

P U B L I C R E L AT I O N S I N T E R N SKate Fremont-SmithKathleen O’Brien

P R O G R A M C O O R D I N AT O RTracy Namie

M E D I C A L E D I T O RJonathan Goldsmith, M.D.

IDF Advocate is published quarterly by theImmune Deficiency Foundation. To obtaina free subscription, please contact:

The EditorIDF AdvocateImmune Deficiency Foundation40 West Chesapeake Avenue, Suite 308Towson, Maryland 21204

Toll-Free 800-296-4433Direct 410-321-6647Fax 410-321-9165E-mail idf@primaryimmune.orgWeb Site www.primaryimmune.org

treatment regimens.The meeting, held April 15-16,

2004 in Raleigh, NC, produced ablueprint for developing clinical careguidelines with the goal to decreasethe time for patients to get diagnosedand establish treatment and careguidelines for individuals with primaryimmune deficiency diseases. Theguidelines and leadership meetingswere sponsored by Bayer HealthcareCorporation.

“The clinical care guidelines thatwill be established will change theface of how those living with primaryimmune deficiency diseases are diag-nosed and treated,” said JonathanGoldsmith, M.D., interim president ofIDF. “With today’s technologicaladvances and access to information, a9.2-year diagnosis period is notacceptable. It is our responsibility, asmedical professionals, to determinewhat constitutes the best care, treat-ment, and methods of delivery toensure access to equitable and qualitycare for patients and families.”

The goal of this two-day consensusmeeting will be to deliver the IDF’sfirst comprehensive, evidence-based

diagnostic and clinical care guidelinesfor primary immune deficiency diseasesfor patients, caregivers and healthcareproviders. The guidelines, which willbe available later this year, will includerecommendations, strategies, andadditional information to help health-care providers and patients makeinformed decisions about appropriatehealthcare for those living with primaryimmune deficincy diseases. In addi-tion, the guidelines will be dissemi-nated to federal agencies, practition-ers, insurance companies, and medicaland patient associations and journals.The committee members includeRebecca H. Buckley, M.D., Chair,Mark Ballow, M.D., Francisco Bonilla,M.D., Ph.D., Erwin Gelfand, M.D.Richard Hong, M.D., Roger Kobaya-shi, M.D., Bruce Mazer, M.D. andHans Ochs, M.D.

IDF Hosts Volunteer LeadershipConference

A National Volunteer LeadershipConference was held April 16–18,2004, also in Raleigh, N.C. The con-ference brought together IDF volun-

Copyright © 2004 by the Immune Deficiency Foundation

The Immune Deficiency Foundation is a publicly supported tax-exempt organization as described under Section 501(C)(3)of the Internal Revenue Code of 1954, as amended.

continued on page 3

Awareness Week continued from page 1

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IDF Local Volunteers Attend IDF Volunteer Leadership Conference in Raleigh, North Carolina

State and Federal Support of PIDD

teers, including primary immune defi-ciency diseases patients and familymembers, from 32 states for a week-end of training with the latest infor-mation, research, news, and outreachtools to continue raising awarenessand improving the quality of life forindividuals with these rare disorders.Kris McFalls, IDF volunteer, said,“What made this week even moreremarkable was having the opportuni-ty to connect with other volunteers.Meeting other people like me who arededicated to improving the lives ofthose living with primary immunedeficiency diseases was an empower-ing experience that made me a betteradvocate for those who are affected bythese disorders.”

IDF volunteers plan local meetingsand serve as a resource for thousandsof patients and families throughoutthe year.

Extending Reach to MedicalProfessionals

G. Richard Barr, M.D., Chairman ofthe IDF Board of Trustees andJonathan Goldsmith, M.D., IDF, VicePresident of Medical Affairs andInterim President, presented to theAmerican College of Allergy, Asthmaand Immunology (ACAAI) Board ofRegents to discuss methods by whichboth organizations may collaborate inthe future. Reflecting on the event,Dr. Barr said, “It’s important for us toreach out to this group of 4,000 specialists. We look forward to work-ing together in the future.”

Advocacy at the Federaland State Level

As an important part of IDF’s mis-sion to advocate on behalf of individ-

uals affected by primary immune defi-ciency diseases and their families, IDFworked with volunteers throughoutthe U.S. to educate state and federalpolicymakers about primary immunedeficiency diseases. These volunteersand IDF staff secured proclamationsrecognizing Primary Immune Defi-ciency Awareness Week from the fol-lowing states: Maryland, Wisconsin,Connecticut, Louisiana, Tennessee,Minnesota, Texas, Virginia and WestVirginia. Members of the U.S.Congress issued statements on theHouse and Senate Floors and/or sub-

mitted statements to the Congres-sional Record. The following madestatements that were entered into theCongressional Record: Sen. Durbin,(D - IL), Sen. Landrieu (D - LA),Sen. Mikulski (D - MD), Sen. Murray(D - WA), Rep. Baldwin (D - WI),Rep. Boehlert, (R - NY), Rep. Brady(R - TX), Rep. Brown (D - OH),Rep. Jenkins (R - TN), Rep. McCrery(R - LA), Rep. Price (D - NC)

Retaining Plasma Donorsthrough Education

Baxter Biolife and IDF collaboratedto pilot a “Putting a Face on Primary

Immune Deficiency Diseases” cam-paign. This program, held at sixBaxter plasma collection centers inthe Pacific Northwest, brought plasmadonors to the centers to participate ina “Food, Fun and Facts” event to educate them on the importance of

their plasma donation and how ithelps improve the lives of patientswith primary immune deficiency diseases. Plasma donors will continueto be invited to contribute their pay-ment for their plasma directly to IDFand are encouraged to remain an activeplasma donor. The proceeds helped tounderwrite scholarships for families toattend the IDF Family Weekend Retreats.Amy Cynkar, Marketing & CorporateCommunications Director for BioLifePlasma Services commented on theevent, “We are pleased to work withIDF to bring these positive programsto our local communities, which inturn will assist families.”

The activities planned and implementedduring National Primary ImmunodeficiencyAwareness Week underscore the missionof IDF and lay the foundation for greaterrecognition of this community in comingyears. ■

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Dr. Roger Kobayashi Addresses IDF Volunteers

Terry Tenbrunsel, of Bayer Corporation,welcomed volunteers to Raleigh.

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Kathy Antilla was very concernedabout her son Isaac when he began tobattle infection after infection shortlyafter his birth. No one could tell herwhy. When Isaac turned five, he wasfinally diagnosed with Common Var-iable Immune Deficiency (CVID), arare and chronic immune deficiencydisease, which would affect Isaac forthe rest of his life. At first Kathy wasthrilled that the doctors had a diagno-sis, however she was terrified becauseshe had no idea what this meant forIsaac’s future.

Coping with a primary immunedeficiency disease is difficult not onlyfor the person with the illness, butalso for the people who love and wantto care for that person. It is notalways easy to know how best to carefor a loved one in a way that willmake life enjoyable for the caregiver,the individual, and everyone elseinvolved. An important idea toremember is that with adjustment andtime, anybody; a spouse, parent,grandparent, or child, can learn howto become a successful caregiver.

Kathy, along with other caregivers,learned that it was normal to feelscared, overwhelmed, and helplesswhen Isaac was diagnosed with animmune deficiency. One of the bestways she learned to overcome thesefeelings was by becoming proactive inunderstanding the diagnosis and treat-ment. She began to research the dis-ease in books, on the Internet, and by

making a list of questions to ask Isaac’sexperienced doctors. Kathy also beganreading about the Immune DeficiencyFoundation. There she found peopleeducated in primary immune deficien-cy diseases who were able to talk toher about many of her concerns.Through research, caregivers can dis-cover if there are alternative treat-ments or delivery methods for thera-pies. Caregivers can also find ways tomake the individual feel more com-fortable.

Gail Moore, a primary caregiver toher daughter, Kinsey, describes howshe and her daughter had fun makingart projects and cards for the nursesand doctors in the hospital. For Gail,developing a relationship with herdoctors helped her recognize that shewas capable of understanding the dis-ease and that there were people whowanted to help. Developing a goodrelationship with the person’s immu-nologist and with the nurses adminis-tering therapy helps caregivers andthose for whom they are giving carefeel more comfortable and betterequipped to cope with the disease.

Keeping records and staying organ-ized also helps a caregiver to maintaina sense of control. Caregivers oftenkeep a file and update their medicalrecords such as lab results, hospitalsummaries, and physician summaries.Kathy has kept an extensive binderwith all letters, lab results, orthopedicrecords, and local and regional hospi-

Strategies for Caregiving: Developing Coping Mechanisms through Self-Understanding

I D F A D V O C A T E PAGE 5

tal information, since Isaac’s birth. She says that it’s reallyimportant for her to be organized because she can hold doctors and nurses accountable for their actions and canalso provide doctors and nurses with pertinent, up-to-datemedical information on her son’s history when necessary.

If a patient is undergoing treatment, the best way to trackrecovery is to keep a log. For example, many caregiverskeep an infusion log of the date and time of the last infusion.This log also includes lot numbers of the product, whichcan be helpful in the event of a product recall. Also, care-givers can manage their finances by tracking medical billsand insurance statements. Kathy hopes that her son will seethe work she puts into his disease management and thatone day he will learn to do the same for himself.

By staying organized, caregivers also develop good timemanagement skills. Tools that assist in time managementinclude taking charge, delegating, and prioritizing sched-ules. They think about what is most important to get donetoday, what can wait for tomorrow and they are not afraidto say “no.” Successful caregivers remember not to sweatthe “small stuff.”

Maintaining a positive attitude is essential tobecoming a good caregiver says MelissaSchweitzer, Director of Patient Advocacy at theImmune Deficiency Foundation. Melissa, whoalso is diagnosed with CVID, understands thatcaregivers should concentrate on what they cando instead of what they cannot and that theyshould appreciate their good days. However, sometimesthey have to say to themselves, “My body doesn't always dowhat I want, but my brain is still working and I'm still ableto love and together that helps me have the kind of life Ienjoy.” Developing a sense of humor and thinking of waysto bring laughter and fun into life is a great idea. Melissaalso suggests planning something to look forward to aftertreatments. For example, going out to dinner or lunch aftera doctor or infusion appointment can make managing thedisease seem like less of a chore.

Overall, good caregivers must have realistic expectationsand strength. When things get tough they need to acceptthat everyone experiences some sorrow or misfortune inlife. Melissa’s volunteer work at the Ronald McDonaldhome and a soup kitchen for the homeless helped her toappreciate how fortunate she is despite her illness. Melissaalso advises to think positively about the disease by listingall the positive aspects of taking care of a chronic illness.For example, being a good caregiver gives one a betterunderstanding for others experiencing similar situations ordifficulties. It also helps one to build personal strength tohelp them cope with other difficult challenges that mayarise in the future.

Emphasizing the normalities of life, rather than dwellingon the illness helps those individuals with a primaryimmune deficiency learn how to lead normal lives.Caregivers can encourage the person to go after theirdreams and help them find ways to successfully achievethose goals. Gail Moore advises other primary caregivers tolive for today. As a parent, Gail allows her daughter to leadas much of a normal life as possible. Today, Kinsey is an

honor student at her local school and a competitive gym-nast. She is also active in church activities, chorus, dance,soccer, and community service.

However, a caregiver also needs to acknowledge that attimes, coping with a primary immune deficiency disease isoverwhelming and difficult. Once in a while it is okay togive in to the emotions that go along with this and theyshould allow themselves to feel this way. Melissa describedgrowing up with CVID and how hard it was for her to missso much school because her classmates had difficulty under-

in one’s day-to-day life are key factors inresilience,” according to Reginald Nettles, Ph.D.

“Flexibility and balance

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standing that she just wasn’t feelingwell. “I had to tell them that yes, Ihave this disease and I just can’t alwaysdo everything they can,” she said.

Also, caregivers should not be afraidof getting support from others whowant to help or may be dealing withthe same illness. Caregivers need toremember that they are not alone.Kathy says that even giving supportcan be helpful because talking toother people who are dealing with thisdisease helps her see how far she has

come. Caregivers need to give them-selves credit for the challenges withwhich they cope.

Most importantly, caregivers allowsome time to relax once in a while sothey can re-energize. A caregiver

should not get too caught up in takingcare of another person. At least oncea day they should make plans to getout of the house and exercise, go outfor lunch or coffee with a friend, ortake a relaxing bath. Caregiversshould realize that they must alwaystake care of themselves in order tobest care for their loved one.

Primary immune deficiencies arelife-long chronic disorders, withunpredictable periods of more acuteillness. As a result, caregivers may live

with constant stress, punc-tuated by periods of majorillness and disruption. Atthese times in particular, itcan be very important tohave learned skills thatenable resilience, or theability to bounce backfrom adversity. Accordingto Reginald Nettles, Ph.D.,

founder of Psychological andProfessional Coach Services inColumbia, MD, flexibility and bal-ance in one’s day-to-day life are keyfactors in resilience. Dr. Nettles says,“Close relationships with supportive

family members and friends, and theability to experience and expressstrong emotions are essential. Althoughit is not healthy to dwell on sadnessand grief, it is important to be able toface these feelings honestly when theyoccur.” Joy can arise in life with achronic illness, but usually not with-out facing the unhappy feelings whennecessary. It should also be noted thatprofessional help can be very benefi-cial when stress, anxiety and depres-sion interfere with normal activities.

Each of the individuals mentionedin this article describes some of theways they have managed their liveswith PIDD or as caregivers of peoplewith PIDD. No single strategy worksfor all people. It is therefore essentialfor caregivers to take time out todevelop the self-understanding neededto learn what works for them.

Future issues of the “IDF Advocate”will include articles on the emotionalimpact of PIDD and strategies for managing its effects. Readers are invitedto send questions and comments aboutthis topic to idf@primaryimmune.org tobe considered for discussion. ■

The Patient Notification System(PNS) is a free, confidential, 24-hour communication systemproviding information on plasma-derived and recombinant productwithdrawals and recalls. Led bythe Plasma Protein TherapeuticsAssociation (PPTA), the PatientNotification System was devel-oped by the producers and dis-tributors of plasma products withdirect input from consumers.

Current Patient NotificationSystem (PNS) Registrants:

Get On Board with Technology – Change YourNotification to Email

As of June 11, 2004 express mailwill no longer be an option. Ifyou are currently registered toreceive notification via UPS,please contact PNS today atwww.patientnotificationsystem.org

or call 1-888-UPDATE-U andchange your notification.

Email is instantaneous, trackableand accessible even on travel.

If you are not registered, callIDF at 1-800-296-4433 toobtain enrollment forms.

Don’t Delay, Sign Up for thePNS Today.

Patient Notification System (PNS) Update

I D F A D V O C A T E PAGE 7

for

Have you heard about Blue Jeansfor Healthy Genes yet? It’s theexciting and new fundraising cam-paign that lets you educate othersabout primary immune deficiencydiseases AND raise funds for theIDF just by wearing blue jeans towork or school on a specified day.

Response has been tremendous –IDF has already fielded requestsfrom more than 50 individuals whowant to sponsor a Blue Jeans forHealthy Genes Day. Upon eachinquiry, information packets aremailed out to explain how to hostan event. They provide informationabout IDF for you to present theprogram to your employer forapproval. Information packets areavailable upon request by contact-ing Tracy Namie by phone (800)296-4433 or by e-mail tn@primary-immune.org.

If hosting a Blue Jeans forHealthy Genes Day is not appropri-ate for your place of work, it may bea great idea for someone you knowwho works for a different organiza-tion. You could use the informa-tion packet as a resource to present

the concept to your family mem-bers, friends or neighbors who workelsewhere.

Hosting a Blue Jeans for HealthyGenes Day is an easy way for you tohelp increase awareness of primaryimmune deficiency diseases…sosign up today!

IDF extends a special thanks tothose who have already hosted aBlue Jeans for Healthy Genes Day.

FM Global Insurance, Brecksville, OH

Hirsch Financial Services, Towson, MD

IDF, Towson, MD

Milford Podiatry, Milford, CT

PostHaste Mailing, Annapolis, MD

Primaryimmune Services, Inc, Baltimore, MD

Riverside Elementary School, Westover, WV

SUNY College at Fredonia, Science

Departments, Fredonia, NY

Vogel, Chait, Collins and Schneider,

Morristown, NJ

ZLB Behring, King of Prussia, PA

ZLB Plasma Services, North Charleston, SC

Help support IDF while implementing acasual dress day in your workplace.

Call or email Tracy Namie at 1-800-296-4433 or

tn@primaryimmune.org to become aBlue Jeans for Healthy Genes Coordinator.

Conference Callon IGIVTransitioningEducates PeopleNationwide

Nearly 50 percent of the primaryimmune deficient patients onIGIV therapy may be required totransition IGIV products in 2004due to product discontinuationand new product development.IDF strives to keep patientsinformed about new IGIV productsto enable them to maintain theircontinuity of care and to receiveoptimal treatment.

On March 31, 2004, more than260 participants from 41 statescalled in to a patient educationconference call to hear discussionabout transitioning IGIV products.Callers were provided with recommendations published byIDF’s Medical Advisory Committeeand also heard first-hand frompatients about their experienceswith IGIV product transitioning.

The call was a novel way to educate the community and it received high praise from partici-pants who completed evaluationsafterwards. Ninety percent ofrespondents agreed that the infor-mation presented on the conferencecall impacts their understandingand/or management of their primaryimmune deficiency disease. And100 percent indicated that theywould participate in another conference call on this topic.

The conference call was sponsored by Bayer Healthcare.

Last year, the Social Security Admin-istration (SSA) revisited the medicalcriteria for evaluating immune systemdisorders of adults and children for dis-ability benefits. IDF immediately contacted SSA to explain the currentproblems the primary immune deficiencydisease community was facing in ob-taining disability benefits. Most pa-tients were being denied disability ben-efits because the SSA adjudicators didnot know or understand primary im-mune deficiency diseases. Someimmune deficient patients went togreat lengths, including hiring attor-neys, to appeal denials, and many ofthose attorneys did not understandPIDD. It could take years before apatient would have a hearing before ajudge, and then, in most cases, theSSA medical expert had never heard ofprimary immune deficiency diseases.

During the period of investigationlast year, IDF was invited to testifybefore the Social Security Administra-tion in two hearings held in Philadel-phia and San Francisco. Bonnie Doak,Dale Weatherford and Jan Christensen,members of the primary immune defi-ciency community and volunteer lead-ership of IDF, participated at the SanFrancisco meeting and were able togive first-hand testimony of what it islike coping with these rare disorders asa patient or as a family member. Addi-tionally, attorney Bill Leach, of ACCESS,a program that provides free legal counselfor immune deficient patients trying toobtain disability benefits, participatedat both meetings. He was a wonderfulrepresentative for this community and

was able to supply first-hand knowledgeon the difficulties primary immune defi-cient patients have in obtaining disabilitybenefits and ways to improve the system.

IDF remains at the forefront of thisissue and will communicate thechanges occurring in the disabilityprogram. Following below is contactinformation for the ACCESS programfor any patients currently applying fordisability benefits or those who havebeen denied. Attorneys at ACCESSare experts in these diseases and theirservices are free of charge.

For information on these recom-mendations, call 1-800-296-4433to speak with Michelle Vogel, IDFDirector of Government Affairs. ■

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IDF

at Work for YouAdvocacy

ACCESS Program4710 Eisenhower Blvd., Ste. E3Tampa, FL 33634Phone: 888-700-7010Fax: 813-886-1324

IDF recommendations to theCommissioner on Disability, of theSocial Security Administration (SSA)

Adjudicators should:

• Consult with immunologiststrained in primary immune deficien-cy diseases throughout the disabilityprocess, especially during the hearing.

• Understand that these disease aremarked by recurrent, poorly respon-sive, severe, or unusual infections.These infections are a result of defectsin the immune system.

• Be aware that immune deficiencyshould be suspected if a person of anyage has more than one pneumoniaper decade of life, chronic sinusitisrequiring antibiotic therapy, chronicbronchitis without history of smoking,increasing number of ear infectionsafter age two years, chronic diarrhealasting weeks to months or recurrentbacteria infections.

• Understand that infections mayoccur as frequently as every two tothree months.

• Be aware that affected individu-als may also have autoimmune dis-eases and cancer in conjunction withtheir immune system abnormalities.

• Understand that every infectionmust be considered a serious infec-tion for this population, since theimmune system is compromised.

As a result of IDF’s participationin this process, SSA has made thefollowing changes:

1. SSA will include a list of primaryimmune deficiency diseases to serveas examples in their criteria for dis-ability benefits.

2. SSA will include a list of fre-quency of infections, rather thantypes of infections, in their criteriafor disability benefits.

3. SSA will train adjudicators tounderstand primary immune defi-ciency diseases and use the list ofmore common diseases to help recog-nize the diseases, but know that thereare other diseases that fall under thiscategory.

Save this Date! The Third IDF Na-tional Conference will be June 23-25,2005 in Orlando, Florida at Walt DisneyWorld’s Contemporary Resort Hotel.

Registration materials will bemailed in January 2005 and will then be available online at www.primaryimmune.org.

Early Bird registration rates are ineffect until March 1, 2005. For an

individual, the early bird registrationfee is $95.00 and for a family of up tofour the rate is $175. Conferencenight room rates are $95.00 pernight. The Contemporary Resort willoffer reduced room rates before andafter the conference, so make plansnow to combine a fun family vaca-tion with the largest conference onprimary immune deficiency diseases.

For more information, contact PhyllisShocket at IDF at 1-800-296-4433 orvia email at ps@primaryimmune.org.

I D F A D V O C A T E PAGE 9

National Conference 2005Orlando, Florida June 23-25, 2005

Florence ArnoldKatherine AustinElizabeth BaldSteven CaplanBrandon Michael DahleyBarney DavisJames A. DeChantMegan Erin FeeleyDelores GoldsmithLois GuetzGrant KinnearKen KramH. Willaim MandelbergEric MarderDelia MillerAnita OplingerDoyle RamseySusan RekerSusan Marie RekerGeorge E. RothWilliam RothDavid SimpkinsAnna SimpsonKevin SmithDorothy SpaldingDavid VetterBen WolfLisa Wright

Mark AustinRaeAnn and Nick BarksArnold ChaitAnthony William ColonJohn Patrick ColonChristine Densmore &

Alan DruckenmillerGini Lea EnnisJeremy EnnisAmanda FloodTara GuetzNorman HallMichael L. KarasThe Kollegian FamilyEileen LackeySusan PopkinJohn RakckanBernie and Shelly ShamblottThomas Ryan SmithWilliam H. & Kathleen D. StouerJacob Waugh

AAAAI Membership DonationAbbott LabsBlair-Huntingdon County CFCBox Office BartersChino Hills Lions ClubFamily Practice ResidencyFleet Matching GiftFranklin Holly Day Committee, Franklin Merchants, MIHealth AdvancesIBMJewish FoundationJones & Richard IncMitsubishi Electric Automotive America, IncNY United Way CFCProfit Portfolio, LLCSaint-Gobain Corporation FoundationSam’s ClubUnited Way of Central MDWorld Reach American Express

Gifts In Memory Of Gifts In Honor Of Corporate Giving

IDF extends its gratitude to those who generously contribute to the organization, which enables the IDF to fulfillits mission of education, research and advocacy. For more information call 1-800-296-4433.

Philanthropy

Conference ThemeContest

Do you have a creative theme for the2005 National Conference at Disney’sContemporary Resort? The contest winnerwill receive free registration and housing forconference nights. Submit theme ideas byAugust 31, 2004 to Phyllis Shocket at IDFvia mail or email to ps@primaryimmune.org.

The Immune Deficiency Foundationstrives to provide resources for bothpatients and families and for health-care professionals. Toward that goal,IDF recently produced two new publi-cations – an IDF Overview brochureand a Medical Services brochure.

The IDF Overview brochure isdesigned for patients and their fami-lies and it describes IDF’s programsand services.

The Medical Services brochureincludes information on services andprograms IDF provides to healthcareprofessionals.

Both brochures may be accessedonline at www.primaryimmune.org oryou may call 1-800-296-4433 tohave one mailed to you.

New IDF BrochuresIntroduce Foundationto Patient And Medical ProfessionalAudiences

PAGE 10 I D F A D V O C A T E

Educational Resources

IDF continues to develop the most authoritative educational materials and

information on primary immune deficiency diseases (PIDD) for patients and

healthcare professionals. IDF publications focus on the recognition and diagnosis

of these rare disorders and important life management and patient care resources.

IDF also publishes health advisories on issues that affect the PIDD community.

Volunteers

IDF provides peer support and educational opportunities throughout the

country via a network of local volunteers who are committed to the mission of

the Immune Deficiency Foundation and assisting patients and families in their

communities. Volunteers may provide information on local resources, plan

educational or support group meetings, increase awareness of primary immune

deficiencies in their communities, and serve as advocates in both local and

federal public policy arenas.

Giving

If you wish to become involved by making a financial contribution to the IDF

Endowment Campaign or Annual Fund, there are a number of ways you can

contribute. These include: employer giving programs, gifts through estate

planning, matching gifts or campaign pledges.

Contact IDF

Toll Free Hotline: (800) 296-4433

Immune Deficiency Foundation

40 W. Chesapeake Avenue • Suite 308 • Towson, MD 21204

E-mail: idf@primaryimmune.org

Web site: www.primaryimmune.org

The Immune Deficiency Foundation’sAnnual Research Grant is a national,peer-reviewed competition for research-ers pursuing studies in primary immunedeficiency diseases. The grant awardsup to $100,000 over a two- year periodto a selected recipient dedicated toimproving the understanding and treat-ment of these diseases.

The Immune Deficiency Foundation’s2004 Research Grant has been awardedto John M. Routes, M.D., who is cur-rently completing a two-year study onHerpesvirus 8 in Common VariableImmune Deficiency at the NationalJewish Medical and Research Center in Denver, Colorado. The awardperiod runs from January 1, 2004 to December 31, 2005.

Dr. Routes’ research, entitled“Human Herpesvirus 8 in CommonVariable Immunodeficiency,” will

attempt to determine the prevalence ofHuman Herpesvirus 8 (HHV8) inpatients with Common VariableImmune Deficiency (CVID) and otherimmune deficient diseases. Specifically,Dr. Routes’ work will focus on the roleof HHIV8 infection in impaired B cellsignaling in CVID.

Commenting on the grant announce-ment, Dr. Routes said, “This grant isinvaluable in advancing our research inthe role of HHV8 in the developmentof lymphomas in patients with CVIDand other primary immune deficiencydiseases.”

Dr. Routes obtained his M.D. atIndiana University in Bloomington,Indiana in 1997 and he completed hisResidency at the Internal MedicineUniversity of Utah in Salt Lake City,Utah. He has dedicated thirteen yearsat the University of Colorado Healthand Sciences Center in Denver,Colorado and is currently an AssociateProfessor of the Department ofMedicine and the Department ofImmunology there. Dr. Routes has beenappointed a research grant in theDivision of Allergy and ClinicalImmunology along with his researchassociate William H. Wheat, M.D.,from the National Jewish MedicalCenter, Denver, Colorado.

Dr. Routes completed the Fred O.Lawson Jr. Fellowship in ClinicalImmunology in 1988 and has publishedclose to thirty publications on the studyof Immunology and Virology. ■

2004 IDF Research Grant: Dr. John M. Routes Receives Grant to StudyHuman Herpesvirus 8 in CVID

John M. Routes, M.D.IDF Research Grant Awardee

I D F A D V O C A T E PAGE 11

• Garrett Creek RanchParadise, TXSeptember 10-12, 2004

• Simpsonwood Conference Center Norcross, GAOctober 22-24, 2004

Register Now!IDF hosts two more Regional Family Retreats, offering familiesthe rare opportunity to attend both scientific and life manage-ment skills workshops to hear directly from the experts. Checkyour mail for a brochure or call IDF at 1-800-296-4433 for moreinfo. The brochure is also available at www.primaryimmune.org.

The Immune Deficiency Foundation’sfirst Family Retreat of 2004 proved suc-cessful in many ways. Individualsaffected by primary immune deficiencydiseases and their families from 12states gathered for the weekend atWoodloch Pines Resort in Hawley,Pennsylvania to learn more about thelatest advances in research and treat-ments from leading experts, while alsosharing their own experiences withothers facing these rare diseases. Nearly200 people attended. This wasthe first of four regional retreatsplanned for the year.

There was something to do for allages. Daytime activities on Saturdayand Sunday gave adults the opportuni-ty to hear from leading physiciansincluding Kathleen Sullivan, M.D.,Ph.D., Ramsay Fuleihan, M.D., Ph.D.,Donatella Grafino, M.D., and RobertHostoffer, D.O. Other speakers includ-ed Elyse Murphy, R.N., from ZLBBehring, who spoke about IGIV safetyin responding to emerging pathogens.

Nurses Kim Duff and Linda Schneiderspoke about building a better relation-ship with your healthcare team andReginald Nettles, Ph.D. discussed cop-ing and life management approaches.Terri Seargent, of ZLB Behring, gave alecture on insurance issues. On Sunday,a patient panel answered questionsposed from others.

While the adults where busy learn-ing, the children were outside in thesnow participating in various sportingevents in a mini 2004 Winter Olympics,hosted by Woodloch Resort for all of itsguests. The IDF 10-12 age group placedsecond, earning medals for each partic-ipant. There was also a special programfor teens this year with educational ses-sions emphasizing the importance ofmaintaining health insurance, commu-nicating with their physicians and specialists, and team-building.

This marks the sixth year for thefamily retreats program. The NorthwestRetreat occured June 11-13 in Bend,Oregon. Details on the two remainingretreats follow below. ■

2004 Family Retreats Education, Networking and Supportin a Family Friendly Weekend

IDF BOARD OF TRUSTEES

CHAMPIONS CIRCLE OF SUPPORT

The Champions Circle consists of organizationscommitted to supporting IDF at the highestlevel. The Circle provides vital resources tofulfill the vision, mission, and core services ofthe Immune Deficiency Foundation.

Immune Deficiency Foundation40 West Chesapeake AvenueSuite 308Towson, Maryland 21204

Address service requested

Mark your CalendarsIDF Regional Family Retreats 2004

Please see Page 11 for more information.• Paradise, TX, September 10-12 • Norcross, GA, October 22-24

• Columbus, OH, June 12• Prospect, CT, July 10

• Green Bay, WI, July 17• Seattle, WA, August 28

IDF National Conference 2005The Third IDF National Conference will be held June 23-25, 2005 inOrlando, Florida. See page 9 for more details.

IDF Local Patient Meetings 2004IDF plans educational and support meetings in local communitiesthroughout the year. For more information call IDF at 800-296-4433.

Combined Federated Campaign (CFC) #9808

G. Richard Barr, M.D. Chairman

Kathy Crews, Vice-Chairman

Marcia Boyle, FounderSecretary

Katherine AntillaBarbara BallardDouglas BellJohn Boyle, Ph.D.

Rebecca Buckley, M.D. Chairman, Medical Advisory Committee

Carol Ann DemaretWilliam KnottRobert LeBienPatrick SchmidtJerry Winkelstein, M.D.

Jonathan Goldsmith, M.D. Interim President

American Red Cross

Baxter HealthcareCorporation

Bayer Healthcare

FFF Enterprises, Inc.

Grifols

Octapharma

Primaryimmune Services Inc.

ZLB Behring

Non-profit Org.U.S.Postage

PAIDAnnapolis,MDPermit No.273