SUMMER 2001 NUMBER 38 IDF ADVOCATE · Each evening, social events provided still more chances for people to learn and “open up.” On Friday night, the National Aquarium in Baltimore

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This newsletter is sponsoredby an educational grant from Bayer Corporation

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Over 1,000 attend first IDFNational Conference

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Our day on Capitol Hill

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Dr. Goldsmith joins IDF asfirst Medical Director

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Everyone wants to volunteer–here’s how

“...you walk in andrealize, ‘I am not alone.’”

At the back of the vast hall thelast seats were going fast. As thespeakers were making final prepa-rations up front at the podium,people were still crowding in,making room, getting children set-tled. It was then, looking forwardin the semidarkness, that youbecame aware of just how manypeople had come together here–row upon row, most meeting forthe first time, many having nevermet anyone who shared theircondition.

It was the opening session ofthe first National Conference of theImmune Deficiency Foundation,Friday morning, June 22, 2001,at the Marriott Waterfront Hotelin Baltimore. IDF President TomMoran, new IDF Board ChairmanRichard Barr, M.D., and IDFFounder Marcia Boyle stood beforethe crowd and tried to expressthe meaning of the gathering.

“This is a kind of medical

Woodstock,” observed Tom Moran.He gave the official count of thefirst gathering of people with pri-mary immune deficiencies as over1,000 attendees, including some60 medical professionals and 120representatives from industry andgovernment. “Everyone expecteda small group–but here we are!”

Dr. Barr, himself a CVID patient,reflected on the audience’s sharedconcerns and interests–medical,lifestyle, legislative. ”In the end,“he noted, “what probably mattersmost is the chance simply to meetmore people who know what itmeans to have a primary immunedeficiency.”

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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

Over 1,000 people attended the IDF National Conference

First IDF NationalConference an inspirational experience

IDF ADVOCATE

Marcia Boyle told the history ofthe Foundation, from home-growndream to national organization. Shereminded us, “Please don’t take IDFfor granted. It is in the interest ofeveryone in this room to have astrong organization for primaryimmune deficiency diseases. Toensure the best possible outcome inthe future for yourselves and oth-ers, get involved. Go to meetings,contribute money, write letters.”

Then, in what for many attendeeswas the emotional center of the entire

conference, Carol Ann Demaret spokeabout her son David, “the boy inthe bubble.” She noted that thisremarkable child had put a face onprimary immune deficiencies despitehis isolation, and that she contin-ued to feel his presence. “He nevertouched the world,” she concluded,“but the world was touched byhim.” The audience members stoodand applauded, together recogniz-ing their own fears and hopes inher quiet evocation of her son’sshort life.

E D I T O RElizabeth Lee

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

IDF Advocate is published quarterlyby the Immune Deficiency Foundation.To obtain a free subscription, pleasecontact:

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

Toll Free 800-296-4433Direct 410-321-6647Fax 410-321-9165E-mail [email protected] site www.primaryimmune.org

Copyright © 2001 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.

Carol Ann Demaret (center) with IDF friends

Tom Moran, IDF President, addresses the opening session. Seated, left to right,are Carol Ann Demaret, Marcia Boyle, and Richard Barr, M.D.

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A MESSAGE FROM THE EDITOR

Welcome to the first issue ofour revised national newsletter.We hope you will find it ashelpful and informative as allthe newsletters we have pub-lished to date, yet with astronger emphasis on action,as reflected in our new title,IDF Advocate. The title worksin two ways: we’re here to actas advocates for people withprimary immune deficiencies,and our readers are here to actas advocates for IDF, volunteer-ing to join in the Foundation’swork and increase awarenessof it. Thanks for your support.

CONFERENCE SESSIONSON AUDIO TAPE

For information on orderingaudio tapes of the IDF NationalConference, please contactChesapeake Audio at 410-796-0040.

IDF ADVOCATE

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So many opportunitiesto learn

The conference began onThursday, June 21 with “IDF Dayon Capitol Hill” (see “IDF Stormsthe Capitol,” page 5) and a dessertreception in the evening. DuringFriday’s scientific keynote address,IDF Medical Advisory CommitteeChairman Jerry Winkelstein,M.D., a professor at the JohnsHopkins Children’s Center, guidedattendees through the intricaciesof the human immune system, themore than 85 primary immunedisorders, current therapies, andfuture possibilities.

For the remainder of the day,scientific sessions covered IGIVtherapy, genetic testing, bonemarrow transplantation, and gene

therapy. These were followed by“specific diagnosis sessions”where individual conditions werediscussed. The next day was filledwith another full slate of sessions,addressing “living life with pri-

mary immune deficiencies” andsuch topics as alternative methodsof IGIV delivery, health-relatedlegislation, nutrition, parenting,and blood safety and availability.

Between sessions each day thehalls would fill with attendeesintroducing themselves, compar-ing notes, sharing stories. At thesame time, the conference’s corpo-rate sponsors and exhibitors pre-sented information and answeredquestions in the exhibit hall.

So many opportunitiesto connect

Each evening, social eventsprovided still more chances for peopleto learn and “open up.” On Fridaynight, the National Aquarium inBaltimore was the site for an IDFExtravaganza, with an overflowparty at Harrison’s Pier 5 restaurant,both sponsored by Aventis Behring.On Saturday night, the IDF 20th

Anniversary Celebration, sponsoredby Bayer Corporation, featuredcocktails, dinner, and music. IDFpresented several major awards dur-ing the event. Mary Ellen Conley,M.D. of St. Jude’s Research Hospitalwas given the 2001 Boyle ScientificAchievement Award. Then theAmerican Legion Child WelfareFoundation, represented by BillPease, Executive Secretary, wasgiven an award recognizing theoriginal American Legion grantthat provided the initial fundingfor IDF.

IDF Extravaganza at the National Aquarium in Baltimore

Jerry Winkelstein, M.D., IDF Medical Advisory Committee Chairman

Mary Ellen Conley, M.D. receives the 2001 Boyle ScientificAchievement Award from IDF Chairman Richard Barr, M.D.

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“Two things stand out from the con-ference: First, I had no idea you couldinfuse gammaglobulin at home.We’re now looking into it. Second,seeing so many people helped usrealize that we’re really not alone. Idon’t feel as isolated as before.”– Kay Conway, attendee

A T T H E

C O N F E R E N C E :

P R A C T I C A L

I N F O R M A T I O N ,

P E R S O N A L

F E E L I N G S

In a moving tribute by RichardBarr, M.D. on behalf of the Boardof Trustees, IDF founders MarciaBoyle, John Boyle, Ph.D. and JerryWinkelstein, M.D. were givenspecial awards recognizing theirdedication, foresight, and perse-verance for over 20 years. John G.Boyle helped present these awardsto his parents and his physician.Afterward Dr. Winkelstein notedthat, “I have many warm memories,having watched this large and vitalorganization grow over a period of

two decades, from anidea first worked outon the Boyles’ kitchentable. I was there at thebeginning and I neveranticipated how suc-cessful this would be,how many people itwould help.”

A turning pointKaty Weatherford, 17, of

Mountain View, California, has aprimary immune deficiency. Butuntil the IDF National Conference,only her family and her doctorknew about it. She never told anyof her friends, and in fact hadnever met anyone else with a pri-mary immune deficiency.

“Before, I pretty much hid mydisease from my friends,” Katyrelates. “I didn’t really want to talkabout it because I thought I was afreak. But now that I’ve met somany other people who have simi-lar conditions and lives, it makes iteasier to talk to my friends. Theyare very supportive. They had noidea–it’s not something that shows–but now they accept it. I’ve cometo realize this isn’t something thatshould be hidden. It’s part of you.”

Katy is thinking about studyingpsychology or the arts in college. Ina conference session on education,she learned about laws that pertainto college education for people withimmune deficiencies and other med-ical problems. “I think the confer-ence was wonderful,” she states.“You could learn a lot, and whenyou walk in and see everyone, yourealize ‘I am not alone.’ I want to goback in two years and help otherpeople find the help that I found.”

Richard Barr, M.D. (at right) and John G. Boyle (middle) present awards to IDF founders (from left) John Boyle,Ph.D., Jerry Winkelstein, M.D., and Marcia Boyle at the IDF 20th Anniversary Celebration

Families enjoy timetogether at the

Conference

Boys playing at the Aquarium

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S P O N S O R S

O F T H E I D F

N A T I O N A L

C O N F E R E N C E

PLATINUM SPONSORS

Aventis Behring

Bayer Corporation

FFF Enterprises, Inc.

GOLD SPONSORS

American Red Cross

Baxter Healthcare Corporation

SILVER SPONSORS

Alpha Therapeutic Corporation

Gentiva Health Services

ZLB Bioplasma Inc.

“At one of the exhibits, we wereall listening to a woman talk abouther young child who has commonvariable, and how he has horriblebehavior problems on the day oftreatment. The rep was very sym-pathetic, and it helped him under-stand a little about what we gothrough. I felt that the companies,the physicians, and the speakersreally cared about us as individu-als. It just seemed genuine.”– Jami Whaley, attendee

“What I heard from 80% of theattendees was that the mostimportant aspect of the confer-ence was the chance to talk toother people, people goingthrough the same situations in life.We learned a lot about the outlook

of the primary immune deficientpatient–the isolation, the need forcontact and good information, theneed for more convenient and reli-able medications.”– Bruce Bunyan

Aventis Behring

“People told me that just bybeing there and networking withothers, they found a new medicalresource or a new way to handle aproblem, and they were just awedby the experience. Overall, we gotcloser to our patients, who tend tobe out there at the end of a longdistribution channel. This will helpus in our service and support.”– Cathryn Hope

ZLB Bioplasma

Industry representatives at the IDF NationalConference included (left to right):Kyle Bush, Baxter Healthcare; TerryTenbrunsel, Bayer Corporation; PatrickSchmidt, FFF Enterprises; Paul Perrault,Aventis Behring; Chris Lamb, American RedCross; and Pete DeHart, ZLB Bioplasma.

P E R S P E C T I V E S : O N I N D U S T R Y A N D B Y I N D U S T R Y

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“I must admit,” states Kathy Antilla,IDF local program leader fromMinnesota, “there’s something inspir-ing about going to Washington andseeing the hallways and meetingrooms filled with people who careabout primary immune deficiencies. Icame away convinced that there wasso much more we could do if we allwork together.”

On Thursday, June 20, 2001, as partof the IDF National Conference, busescarrying over 250 people affected byprimary immune deficiencies traveledfrom Baltimore to the halls ofCongress. In an effort led by JasonBablak, IDF Vice President for PublicPolicy, they had written their Houseand Senate representatives to arrangebrief meetings, where they would pro-pose a national study of the safety oflong-term IGIV use. Their goal: to con-vince their representatives to writeletters to the heads of appropriationscommittees, asking them to fund thesurveillance program. Kathy Antilla

and her two sons (one a patient) metwith Senator Paul Wellstone and hishealth aide, both of whom were eagerto hear about primary immune defi-ciencies, very supportive of IDF’s ini-tiative, and well aware of researchfunding challenges.

“I didn’t expect it to be so positive,”

IDF Storms the Capitol

IDF goes to Washington

IDF STORMS, CONTINUED ON PAGE 6

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Starting August 1, 2001, JonathanGoldsmith, M.D. became the firstIDF Medical Director. Dr. Goldsmithhas worked in academic medicine,where he treated people with pri-mary immunodeficiency, and in theimmunoglobulin industry, wherehe worked on blood safety issues.

“As full-time Medical Director,”Dr. Goldsmith notes, “I can helpIDF develop greater continuityin terms of day to day monitoring,guidance, and implementation toachieve medical objectives. Forexample, I’m eager to work with theIDF Medical Advisory Committeeto obtain guidance regarding thesafety of new therapies and howbest to represent the Foundation’s

constituency–the patients–in lightof these. I hope to help guidethe IDF research agenda, ensureadequate supplies of therapies inthe face of chronic shortages,deal with the FDA and industryto establish protocols that provesafety and effectiveness, andadvance diagnosis and treatment.

“I will also bring in new per-spectives by consulting withother organizations’ medicaldirectors, who work with differ-ent medical conditions but simi-lar blood product challenges.”He concludes, “There’s plenty ofwork to do. We have a great staffin place, and I think we canmake real progress.”

The doctor is in: Jonathan Goldsmith, M.D. becomesthe first IDF Medical Director

Jonathan Goldsmith, M.D. with members of the IDF Advisory Committee: Top row, L to R: Jonathan Goldsmith, M.D., Stephen Miles, M.D., E. Richard Stiehm, M.D., Richard Johnston,Jr., M.D., R. Michael Blaese, M.D., Mary Ellen Conley, M.D., Melvin Berger, M.D.Bottom row, L to R: Richard Hong, M.D., Jerry Winkelstein, M.D. (Chairman), Rebecca Buckley, M.D.,Charlotte Cunningham-Rundles, M.D., Ph.D., Hans Ochs, M.D.

Kathy states. “I expected to be lis-tened to politely and sent on myway. But I really felt the people wemet with were paying attentionand were concerned.”

“This was a remarkable event,”notes Jason Bablak. “It was thelargest Congressional effort I’veever taken part in, and thepatients set it all up themselves.The group was definitely fired upby the experience.”

As part of the trip, Carol AnnDemaret presented Kevin Brady, aCongressman from Texas, with theIDF Public Policy LeadershipAward, citing his work as “a tire-less champion in support of IDF’spublic policy priorities,” includingincreased funding for research atthe National Institutes of Healthand support for the IGIV surveil-lance program. In his remarksCongressman Brady emphasizedthe importance members of Congressplace on hearing constituents’ per-sonal experiences, and assured IDFof his continued support.

Carol Ann Demaret presents Republican Congressman KevinBrady with the IDF Public Policy Leadership Award

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PA G Ex

Charitable giving established theImmune Deficiency Foundation andcontinues to support many of itsimportant programs on behalf ofthose with primary immune defi-ciency diseases. You can become aphilanthropic contributor in thefollowing ways:

• To make a gift of cash, mail yourcheck to the Immune DeficiencyFoundation.

• To charge a gift to MasterCard orVisa, please call IDF headquarters.

• Gifts of stock and bonds: Youmay make your gift in the formof appreciated securities ratherthan cash, in order to benefit fromextra tax advantages (such asavoidance of capital gains taxes).

For information, please callMarcia Boyle at IDF headquarters.

• Gifts through bequest or otherforms of estate planning: You maywish to support IDF by includingit in your will or trust, naming itas a beneficiary of a charitable giftannuity or charitable remaindertrust, or naming it as the benefi-ciary of a life insurance policy. Forinformation, please call MarciaBoyle at IDF headquarters.

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

Toll-Free 800-296-4433

P H I L A N T H R O P Y

THANK YOU FOR YOURGENEROUS GIFTS

The Immune Deficiency Foundationgratefully acknowledges gifts madein honor of the following:

Mark AustinEric Benson Blum and

Lauren Heather KanderEngagement for Eric Marder FundHarold Cederbaum 80th BirthdayMocelle FunderburkJeffrey and Kristin Goldscher Wedding

for Eric Marder FundMr. and Mrs. Kimmerle 20th Wedding

AnniversaryMicki Naiditch for Eric Marder FundEllen Willsey 60th Birthday

The Immune Deficiency Foundationgratefully acknowledges gifts madein loving memory of the following:

Verna AbernethyE.N. (Bud) BabcockManny BarreroErika BowmanBetty Carp for Eric Marder FundDavid ChaitMace CrawfordMegan FeeleyKermit GardnerBea GlassmanJustin Bryce Haning BirthdayDr. Morry KristalMark V. LonerganEric MarderJohn McGeary, Jr.Honorable Grainger McIlhanyRita MeldrumThe mother of Jenny O’HaraDr. Edward SchnollClifford ScottDr. Roger Van Der VoisteFanny WaldRose Weiner

To make a gift “in honor of” or “inmemory of” please send your checkto the Immune Deficiency Foundationwith a note indicating how you wouldlike your gift identified.

How to become a philanthropic contributorto the Immune DeficiencyFoundation

How to volunteer your help The recent IDF National Conference

inspired people as never before toassist IDF in its work. We havereceived a tremendous number ofrequests asking what types ofwork are needed and how to vol-unteer. Some of the ways you mayassist us include:

• Providing personal support andinformation to people affectedby primary immune deficiencies.

• Joining public policy letter-writing campaigns.

• Increasing public awareness ofprimary immune deficiencies bydistributing literature or speakingin public forums. If you have additional ideas about

ways you may be of assistance, wewould be happy to discuss them.For information about volunteering,please contact Jennifer Bass at IDFheadquarters by calling 800-296-4433.

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Non-Profit Org.U.S. Postage

PAIDEllicott City, MDPermit No. 70

Immune Deficiency Foundation40 West Chesapeake Avenue, Suite 308Towson, Maryland 21204

Return service requested

IDF SUSTAINING

CONTRIBUTORS

Alpha Therapeutic Corporation

American Red CrossAventis BehringBaxter Healthcare

CorporationBayer Corporation

Caremark TherapeuticServices

Gentiva HealthServices

FFF Enterprises, Inc.OctaPharmaZLB Bioplasma Inc.

Richard Barr, M.D., ChairmanAaron Ashcraft, TreasurerJohn Boyle, Ph.D.Kathy Crews, SecretaryCarol Ann DemaretBonnie DoakPhilemon GreenhawkJerry HobsonRobert LeBien, Vice ChairmanJeffrey RossJerry Winkelstein, M.D.

A Youth Program and childcare were provided at the IDFNational Conference through a generous grant from Baxter.Highlights included a trip to Port Discovery and an Oriolesbaseball game (above).

I D F B O A R D O F T R U S T E E S

IDF ADVOCATE