Diagnosis Survey ..............................1-2Health Insurance CoverageFor College Students ......................3

Medicare IVIGAccess Act..................3Diagnosis Interviews .......................4-6New Plasma DonationWebsite........6IDF Family Retreats ............................7Industry News ......................................8SCID International Conference ......9Volunteers Across the Country .....10With Gratitude ..................................11Monthly Giving Program..................112009 National Conference ............12

Immune DeficiencyFoundation Mission:

The national patientorganization dedicated

to improving thediagnosis, treatmentand quality of life ofpersons with primaryimmunodeficiencydiseases through

advocacy, educationand research.

FALL 2008 NUMBER 59

THE NATIONAL NEWSLETTER OF THE IMMUNE DEFICIENCY FOUNDATION

Since 1995, IDF has taken the lead inconducting national surveys of patients withprimary immunodeficiencies. Our surveydata has been used effectively to advocatewith government for legislative andregulatory remedies for our patients, hasbeen cited and used by medical professionalsto outline patient treatment and diagnosisexperiences, as well as by industry andgovernment to understand the demand forand efficacy of immunoglobulin replacementtherapy. IDF survey data has beenindispensable in furthering theunderstanding of these diseases by betterdefining the health status, treatmentpatterns and psychosocial experiences of ourpatients.

One of the most quoted IDF survey findingsis from the IDF 2002 National PatientSurvey —9.2 years is the average time fromthe onset of symptoms to diagnosis forpatients with primary immunodeficiency.This discovery has stunned many— “Howcould diagnosis take this long?” andoutraged others—“Something must bedone!” Nonetheless, over the years, the 9.2years average has become universallyacknowledged and accepted.

However, new data from the IDF 2007National Patient Survey has provided uswith some interesting results. It wouldappear as though the average time todiagnosis for patients with primaryimmunodeficiency disease has increasedfrom 9.2 years to 12.4 years. Since the secondsurvey excluded patients who were includedin the 2002 survey, the true average for allpatients would actually be between 9.2 and12.4 years.

The first reaction many have to this news—“How can it be getting worse with all theawareness, education and new medicaladvances?” may not be appropriate. Inaddition, the average age of the patients inthe 2007 survey was almost 39 years,compared to 34 years in the 2002 survey.These results do not necessarily indicate thatit is taking patients longer to becomediagnosed. It could mean that recognition ofthese diseases has actually improved and,that some adults with “mystery” illnesseshave finally received a definitive diagnosis.

The 2007 Patient Survey also saw an increasein the proportion of patients reportingCommon Variable Immodeficiency Disease(CVID) as their diagnosis. These findingswould be consistent with longer times todiagnosis, as those with CVID consistentlyreport longer times from symptom onset todiagnosis than those who report otherspecific primary immunodeficiency diseasediagnoses.

Diagnosis—How Long Does It Take?

2002 & 2007 IDF National Patient SurveysAverage Time to Diagnosis From

Sympton Onset

(Continued on next page)

This newsletter is sponsored byan educational grant fromTalecris Biotherapeutics.

18.2

2 | FALL 2008

IDF AdvocateEditorChristine M. Belser

Medical EditorRebecca H. Buckley, MD

Publication ManagerAdam Freestone

The Immune Deficiency Foundationpublishes IDF Advocate three timesa year. To obtain a freesubscription, please contact:

IDF AdvocateImmune Deficiency Foundation40 West Chesapeake AvenueSuite 308Towson, Maryland 21204

Toll-Free 800.296.4433Direct 410.321.6647Fax 410.321.9165E-mail idf@primaryimmune.orgWeb Site www.primaryimmune.org

Copyright © 2008 by the Immune DeficiencyFoundation. The Immune DeficiencyFoundation is a publicly supported, tax-exemptorganization as described under Section 501(C) (3) of the Internal Revenue Code of 1954,as amended.

Diagnosis—How Long Does It Take?Reasons

to be

Thankful

We are thankfulfor our donors.

In this season ofgiving, won’t you

please support theImmune Deficiency

Foundation?

These longer times to diagnose are oftenperiods of repeated infections for patients.Crippling infections unfortunately canlead to permanent impairments or loss offunction. Survey respondents were askedif they experienced any permanentimpairments or loss of function in suchareas as the lungs, digestive system, intheir vision, hearing or even if they hadmobility or neurological issues before theywere diagnosed.

As the chart below indicates, those whowere diagnosed in fewer than 9 years hadthe best chance of avoiding life-longimpairments and enjoying a higherquality of life. Although immunoglobulintherapy can reduce the frequency andseverity of infections in patients withantibody deficiencies, it cannot erase or fixexisting permanent impairments.

Time to Diagnosis After Sympton Onset30%

25%

20%

15%

10%

5%

0%

25%

13%

20% 20%

16%15%

10%12%

8%10%

5%6%

17%

24%

2002 2007

Less than 1 - 2 3 - 5 6 - 9 10 - 14 15- 19 20 +1 Year years years years years years years

Q9. At what age (in years) was that person first diagnosed with a primary immunodeficiency disease?Q8. At what age (in years) did these repeated, serious unusual infection begin?

Number of Permanent Functional Impairments Before Diagnosis

Five or more

Four

Three

Two

One

None

0 5 10 15 20 25 30 35

Q. By the time of initial diagnosis as immune deficient, had the patient suffered any permanentimpairment or loss of the following.

19.4

30.1

19.1

13.6

8.6

Number of Years Before Diagnosis

The one thing IDF patient data does indicate is that the time to diagnosis for patients withprimary immunodeficiencies is not improving. As the following personal storiesdemonstrate, it is critically important for patients to receive timely and accurate diagnosis.Early diagnosis and proper treatment give patients the best possible opportunity to livehealthy, productive lives.

(Continued from page 1)

ADVOCATE | 3

and well-being of college students withprimary immunodeficiency disease,passed through Congress on September25, 2008. Michelle’s Law was signedinto law in the state of New Hampshireby Governor John Lynch on June 22,2006, and on October 9, 2008, afterbeing signed by President Bush, itbecame law nationwide.

Michelle’s Law is in honor of NewHampshire student Michelle Morsewho was diagnosed with colon cancerher senior year of college. She wasforced to remain a full-time studentwhile undergoing chemotherapy toretain her parents’ health insurance

coverage. Ultimately, Michelle lost herbattle with cancer.

Keeping the struggle of the Morsefamily and other families throughoutthe country in mind, IDF would like tothank all of you who used the IDFAction Alert to contact their Senatorsand Representatives in support of thislegislation, and, of course, SenatorSununu and Congressman Hodes forchampioning such an importantinitiative. It is our hope that studentsin the future will never have to decidebetween their health and theireducation.

LAW ENSURESHEALTH INSURANCECOVERAGE FORCOLLEGE STUDENTSNATIONWIDE

TheCenters for Medicare andMedicaid Services (CMS)announced new rules thateliminate the preadministrative

fee for IVIG infused in the physician’s officeand the hospital outpatient department forMedicare beneficiaries. Thepreadministration fee was introduced byCMS in 2006 to assist physicians in locatingand obtaining IVIG. The new rules alsofurther reduce reimbursement in thehospital outpatient department for allMedicare Part B drugs, including IVIG. Bothrules will begin in January 2009.

IDF is deeply disappointed with thisdecision. It is our belief that eliminating thepreadministration fee and reducingreimbursement for Medicare beneficiaries inthe hospital outpatient department willexacerbate the current access andreimbursement problem.

Citing a 2007 report by the Office ofInspector General, “Intravenous ImmuneGlobulin: Medicare Payment andAvailability,” as well as IDF survey data from2006, 2007 and 2008, IDF responded toCMS by requesting that thepreadministration fee be maintained in bothsettings, and reimbursement in the hospitaloutpatient department not be reduced.

Since June, countless patients, physiciansand family members participated during thepublic comment period following theannouncement of the proposed rules byusing the IDF Action Alert to send lettersdirectly to CMS and to encourage theirlegislators to do the same. IDF is extremelygrateful for the outpouring of support fromthe community on this issue, and for theletters sent to CMS by concerned Senatorsand Representatives.

Please do not become discouraged, butcontinue your commitment to this issue andjoin us in the coming year as we carry on ourefforts on Capitol Hill. We urge you to alertIDF to any problems you experienceobtaining your prescribed product in thesetting that is best suited to your needs, andit is especially important to report anyMedicare related access issues. We alsorequest that you take a few minutes tocomplete any IDF surveys you receive. Thisdata is critical in demonstrating theproblems our patients are facing.

As we prepare for the 111th Congress, IDF isreviewing our legislative strategies. Weremain hopeful that lawmakers will keep inmind the challenges facing our communityand work with us to ensure access to alltreatment options, and quality care for all ofour patients.

SENATESenator Lamar Alexander (R-TN)Senator Sam Brownback (R-KS)Senator Elizabeth Dole (R-NC)Senator John Ensign (R-NV)Senator John Kerry (D-MA)Senator Debbie Stabenow (D-MI)Senator Ron Wyden (D-OR)

HOUSE OFREPRESENTATIVESRepresentative Kevin Brady (R-TX)Representative Jo Ann Emerson (R-MO)Representative Phil English (R-PA)Representative Mike Ferguson (R-NJ)Representative Jim Gerlach (R-PA)Representative Gene Green (D-TX)Representative Wally Herger (R-CA)Representative Maurice Hinchey (D-NY)Representative Steve Israel (D-NY)Representative Sam Johnson (R-TX)Representative Michael McNulty (D-NY)Representative Grace Napolitano (D-CA)Representative Ron Paul (R-TX)Representative Joe Pitts (R-PA)Representative David Price (D-NC)Representative Jim Ramstad (R-MN)Representative Lucille Roybal-Allard (D-CA)Representative Chris Smith (R-NJ)Representative Hilda Solis (D-CA)Representative Ellen Tauscher (D-CA)Representative Tim Walberg (R-MI)Representative Robert Wexler (D-FL)

CMS to Remove Preadministration Feeand Reduce Reimbursement for IVIG

You spoke and Congress listened! Over thecourse of five days, more than 700 peopleused the IDF Action Alert to rally in supportof Michelle’s Law, a bill that provides a 12-month extension for critically ill or injuredcollege students to retain coverage undertheir parents’ health insurance. This piece oflegislation, crucial in protecting the health

OurCongressionalSupporters

4 | FALL 2008

DIAGNOSIS INTERVIEWSAccording to a past Immune DeficiencyFoundation survey of patients, the aver-age time from the onset of symptoms todiagnosis is 9.2 years. Some patients,however, are diagnosed rather quickly.For others, finding the source of illnessstretches on interminably.

“That nine year average looks pretty goodto me,” says John Armes, a 58-year-oldCVID patient from Florida. “It took 28years to diagnose me and all because noone bothered to give me a relevant bloodtest.”

CVID – or Common Variable ImmuneDeficiency – is a disorder characterizedby low levels of serum immunoglobulins(antibodies) and an increased susceptibil-ity to infections. CVID is a relatively com-mon form of immunodeficiency, and theclinical course varies from patient to pa-tient.

John doesn’t place all the blame on themyriad of doctors he encountered onwhat, at various intervals, seemed likeevery two months.

“Look, what you have to remember isthat this was so long ago – and I grew upin a small town in Illinois – so going tothe doctor back then was somethingfolks didn’t do at the first sign of thesniffles. Besides, he was one of those oldcountry doctors who treated everythingwith either penicillin or paragoric.”

Armes does-n’t recall hisearly visitsto that ‘oldcountrydoctor,’but hedoes re-membertheprocessthatplayedout overthe next

20 years, and took the time to documentnearly every experience. John chronicledmore than 100 doctor visits, a thousandblood tests, and six major surgeries, in-cluding the removal of his tonsils, ade-noids, uvula and appendix.

He has suffered from recurring bouts ofpneumonia, lung infections, nausea, diar-rhea and indigestion. Some medical pro-fessionals referred him to psychiatrists,suggesting that perhaps his illnesses wereof the psychological variety. He was alsodiagnosed with chronic fatigue syndromeand sleep apnea – which led to yet an-other surgery for a deviated septum.

“I’ve learned that you don’t live withCVID,” John tells me, “You fight with it.And you better be ready to fight – fightfor everything you need to survive; every-thing you need to have a good quality oflife.”

Matt Roth, a 41-year-old XLA patientfrom Colorado, also cites respiratorydamage as a result of not being diag-nosed in a timely manner. Scar tissue onhis lungs and chronic bronchitis are thelegacy of his elongated diagnosis.

Matt was not quite four when he was di-agnosed with X-Linked Agammaglobu-linemia. XLA is caused by a defect in theBTK gene that resides on the X chromo-some and thus is only expressed in men.

The basic defect in X-Linked Agamma-globulinemia is a failure of B-lymphocyteprecursors to mature into B-lymphocytesand ultimately plasma cells.

Matt was too young to remember the re-current illnesses that had his parents fre-quently calling upon doctors.

“Constant infections,” is how Matt de-scribes his first three years of life, “andquite a few cases of pneumonia.”

Matt, however, still feels his situation wasone of fortune, thanks to a mother whomade her living as a biologist and a fa-ther who worked in the field of chem-istry.

“One of my mother’s brothers was also adoctor,” Matt explains, “My family hadquite the support network, and their un-derstanding of the medical field – espe-cially the research side – was of greatbenefit. It made navigating the healthcare system easier than it is for most peo-ple facing a similar situation.”

He is also quick to point out that livingwith XLA has not prevented him fromliving a normal life, but he does admit toa bit of naivety about how the public atlarge – and even the medical community- perceives those with primary immunedeficiencies.

“It shocks me that the medical field isn’tbetter versed in – or even more aware of –primary immune deficiency diseases. Ithink I’ve long been under the mistakenassumption that immunology study ismuch more prevalent. It’s such a big partof my life that I assume the rest of theworld is just as in tune.”

Ohio resident Mary Rath feels a connec-tion to Matt Roth’s parents; she, too, is amedical professional and credits that ca-reer path with helping during the diagno-sis of her son’s disease.

“Brian was healthy for the first threemonths of his life,” Mary relates, “butfrom that point on, it was doctor visits

by J. Doug Gill

John Armes

Matt Roth and his daughter Jane

ADVOCATE | 5

and antibiotics. And I’m not exaggerat-ing when I tell you that he took antibi-otics about 360 days a year.”

Brian, her son, was diagnosed withHyper IgM Syndrome, but it was notuntil after a serious case of pneumoniathat almost cost him hislife.

Patients with the HyperIgM Syndrome have an in-ability to switch their anti-body (immunoglobulin)production from IgM toIgG, IgA, and IgE, result-ing in decreased levels ofIgG and IgA and normalor elevated levels of IgM.The most common form isinherited as an X-chromo-some linked trait and af-fects only boys.

“He was literally at death’s door,” Maryremembers, “and had it not been for ahematologist who kept insisting thatnormally healthy people do not getpneumocystis, I hate to think of the out-come.”

Pneumocystis is an infection caused by amicroscopic fungus that lives in thelungs of people and usually causes nosymptoms in healthy people, but cancause pneumonia in infants who haveconditions that affect the immune sys-tem. Once the fungus in the lung wasfound, diagnosis came quickly.

Mary documented each time her son gotsick.

“Brian had so many illnesses,” she con-fides, “that I started keeping track ofwhat he had and when. I kept a journal,

mainly because each time we’d go see yetanother doctor they would ask me forhis medical history. After repeatedly lay-ing out this enormous list, I thought itmight be easier if I had it all writtendown.”

Fungal and bacterial are two terms quitefamiliar to Massachusetts resident Bar-bara Meade, the difference being the re-sults were visible and not hidden within.

Barbara’s son, Joe, was diagnosed withCGD when he was two. Chronic Granu-lomatous Disease (CGD) is a geneticallydetermined disease characterized by aninability of the body’s phagocytic cells tomake hydrogen peroxide and other oxi-dants needed to kill certain microorgan-

isms. As aresult, pa-tients withCGD havean in-creasedsuscepti-bility toinfectionscaused bycertainbacteriaand

fungi.

“As an infant, Joesuffered from one skin infection afteranother,” Barbara shares. “He would de-velop various rashes and boils and at thesame time, he was running almost con-stant fevers that the doctors couldn’t ex-plain.”

“He had developed large lymph nodeson his neck,” Barbara clarifies, “and thedoctors had the symptom needed tomake the diagnosis.”

“Even thought it took two years to diag-nose Joe,” she continues, “I – luckily –don’t believe it resulted in additional ad-verse effects. You usually hear aboutCGD being diagnosed much later in life– I think that’s when the irreparabledamage is more prevalent.”

Sadly, some diagnoses of the quick, accu-rate variety happen as a result of thedeath of a preceding sibling. YvetteShorten lost two boys before her third

son, Jerry, was tested at birth for whatdoctors had determined was responsiblefor their passing.

Jerry was diagnosed with Severe Com-bined Immune Deficiency (SCID), themost serious form of primary immunod-eficiency disease. SCID, embedded onthe public consciousness through thecase of David Vetter (“the boy in thebubble”), is a primary immunodeficiencyin which there is combined absence of T-lymphocyte and B-lymphocyte function.

Yvette’s first son, who died in 1972, oc-cupied a hospital room across the hallfrom David.

“They knew right away with my firstson, and instantly put him in a germ-freeenvironment. But he was only with usfor seven months.”

Yvette is even more forthcoming withthe circumstances surrounding the deathof her second child.

“A lot of it was denial,” she says withouthesitation. “Number one, I was con-vinced that there was no way I wouldlose another baby, and to distance myselffrom that loss, I didn’t go back to thedoctor who cared for my first child.Number two, at every single milestonecheck-up for newborns, my new doctortold me that my second child was per-fectly healthy.”

Jerry’s story is nothing short of remark-able. At birth, he was placed in a germ-free environment; at three-and-a-half, hehad his bone marrow transplant.

Mary and Brian Rath

Joe and Barbara Meade

(Continued on next page)

Jerry and Yvette Shorten

6 | FALL 2008

Plasma donors looking for information about eligibility,how plasma is used and locations of source plasmacollection centers now have a new, one-stop resource toguide them. On September 17, 2008, the Plasma ProteinTherapeutics Association (PPTA) launchedwww.DonatingPlasma.org, a Web site dedicated to raisingawareness and providing information about source plasmadonation and how it is used to produce therapies that saveand improve lives. Debunking myths associated withplasma donation and providing testimonials on theimportance of plasma from patients, donors andphysicians will allow individuals, the media, localpolicymakers and the general public to become betterinformed about how plasma is integral to a global medicalchain.

“There are often many misconceptions about plasma andhow it is donated,” said Marcia Boyle, President & Founderof IDF. “This site will help take the mystery out of theprocess and hopefully increase the number of donors,which is always good for our primary immunodeficiencycommunity.”

Visitors can use a zip code search to find a plasmacollection center near them in the U.S., or search a countrylist for centers in Europe. An FAQs section will answer themost commonly asked questions about plasma donationand the differences between blood donations fortransfusion medicine in local hospitals and plasmadonations used to produce therapies for rare, chronicdiseases and disorders like primary immunodeficiencydiseases, hemophilia and alpha-1 antitrypsin deficiency.

NewWebSitewww.donatingplasma.org

DIAGNOSIS INTERVIEWSNow 22, he works as a corrections officer in Texas. Andnot hidden away in an administrative office, either, hewalks the front lines of the general population.

“Oooh… I wasn’t exactly pleased to hear that news,” Yvettelaughs. “And I told him about it, too! Jerry waited for meto finish my lecture and then made a point to use my ownwords against me.”

But she couldn’t argue with his response. Throughouthis life, Yvette would constantly tell Jerry that he was spe-cial, and that he was indeed part of a greater plan.

“He reminded me that I’ve always preached about thepower of prayer and faith,” Yvette continues, “and told mehe was just living his life the way I had taught him – theway God had planned.”

Beyond their connection to immune deficiency, these fiveextraordinary people share a couple of other commonthreads.

All would like to see medical schools worldwide expandtheir curriculum and offer more than a cursory glance atthe immune system.

And all agree that arming yourself with volumes ofknowledge about the disease - even though that puts ad-ditional pressure on the patient and their family – is thefirst step toward feeling like you’re not in this alone.

Macey Holleman, daughter of IDF volunteer Ursula Holleman,visited the Biomat plasma center in Macon, Georgia. MelvinYoung, Manager, gave her a complete tour of the facility and ex-plained every step of the plasma donation process. Macey was ableto speak to several donors and explain how their plasma donationhelped her. Several donors commented that they were glad toknow how much their time and donation helped her. ThanksMacey—we are proud to have you represent IDF!

(Continued from page 5)

Melvin Berger MD, PhDCori Daines, MDMichael Daines, MDMaggi Dodds, CPNP

Kim Duff, RN, BSNGeorge Gwinn, MDLeslie Harman, MA, MFTTerry Harville, MD, PhDDavid Hauswirth, MD

Robert Hostoffer, Jr., DOKim JonesJudi MillerJennifer Puck, MD

Richard Schiff, MDJennifer Seda, MDJohn Seymour, PhD, LMFTLynne Szott, RN

A Special Thanks to our Presenters!

ADVOCATE | 7

This summer, 200 adults and 80 youth from 21 states camefrom throughout the country to join IDF to put the Spotlighton Primary Immunodeficiency at the IDF Family Retreats. TheGold Canyon Golf Resort in Gold Canyon, Arizona in June andthe Hueston Woods Resort and Conference Center in CollegeCorner, Ohio in September provided beautiful backdrops forpatients, family members, healthcare professionals andmembers of industry to share knowledge, experiences and manylaughs.

The Family Retreat weekends featured presentations for adultson a wide range of topics affecting patients with primaryimmunodeficiency diseases, as well as a fun-filled schedule ofactivities for youth attendees throughout the day. Saturdaynight provided an opportunity for everyone to relax and put

their feet up to enjoy the beautiful settings with a barbecuefollowed by a family friendly outdoor movie and snacks.

IDF would like to extend special recognition to Gail Moore andher dedicated team of helpers who make these family retreatssuccessful year after year, since 1997. The 2008 IDF FamilyRetreats were sponsored, in part, through educational grantsfrom the American Academy of Allergy, Asthma, &Immunology, Baxter Healthcare Corporation, CSL Behring,Grifols, IgG America/ASD Healthcare, Octapharma and TalecrisBiotherapeutics.

“I love the family retreats. My 13 year old is veryhappy while I am in classes. If she was unhappy I wouldbe unhappy.”“Thank you for having our family to this retreat. I feelI have started on a new journey.”

“My son now understands his condition. Thank you foreducating him.”“I had the most wonderful time. Everyone, and I meaneveryone, has gone above and beyond.”“Beautiful setting, great family atmosphere!”

IDF Family Retreats—Spotlight onPrimary Immunodeficiency

8 | FALL 2008

Octapharma announced that it will acquire 33 plasmacollection centers from International BioResources(IBR), the largest independent source plasma collectioncompany in the United States. IBR will develop andstaff the plasma centers with over 800 employees. Theplasma centers will be located predominantly in theEast and Midwest.

Plasma is the source of numerous proteins used fordrug development and therapeuticpurposes. Octapharma’s core business is thedevelopment, production and sale of high quality, virussafe plasma derivatives, including IVIG. In the U.S.,Octapharma’s IVIG product, octagam®, is used to treatdisorders of the immune system, and Octapharma’sAlbumin (Human) 5% is indicated for the restorationand maintenance of circulating blood volume.

INDUSTRYNEWS

Grifols Breaks Ground on New IVIG Facility

Grifols announced that its new facility is anticipated to be operational in 2013and represents an expansion of Grifols’ existing manufacturing capabilities inLos Angeles. Grifols’ new production facility will almost double thecompany’s IVIG production capacity and will utilize the same proprietarytechnologies and process flow designs employed at the company’s existingIVIG production facility in Barcelona, Spain.

Building this additional production capacity represents one more step inGrifols’ multi-year global growth plan to meet increasing patient need forlifesaving plasma therapies. Other elements of the long-range investment planinclude expanding plasma collection capacity and additional production andtesting facilities.

Excerpted from Grifols News Release, October 6, 2008.

Talecris Biotherapeutics, Inc. announced that it hassigned a definitive merger agreement with CSL underwhich CSL has agreed to acquire Talecris for $3.1 billionin cash. This amount includes net debt, which as of June30, 2008 was approximately $1.2 billion, implying anequity value as of that date of about $1.9 billion.

The combination of Talecris and CSL will result in:

- a combined company with one of the broadestportfolios in the plasma-derived therapeutics industrywith key products in each plasma therapeutic area;

- one of the most robust and efficient plasma collectioncapabilities in the industry, to better assure supply ofplasma for manufacturing essential therapies;

- expanded and integrated manufacturing with greaterefficiency and improved ability to supply therapies;

- an enhanced R&D pipeline;

- operating efficiencies that will facilitate furtherinvestment in R&D, quality, compliance and plasmacollection; and

- improved and more reliable supply of therapies topatients and customers through efficiencies, avoidanceof capacity constraints and more assured plasma supply.

Closing of the transaction is subject to receipt of certainregulatory approvals, as well as other customaryconditions. If the necessary approvals are not obtainedwithin one year, either CSL or Talecris will have the rightto terminate the transaction.

Excerpted from Talecris Biotherapeutics News ReleaseAugust 12, 2008.

Grifols Launches PediGri®On Line for its US PlasmaTherapies

Grifols launched in the US, itsproprietary PediGri® On Line system thatgives healthcare providers access toquality and safety information about theplasma used in the production of Grifols’therapies.

Through a web portal atwww.pedigrionline.net, registeredhealthcare providers (includingphysicians, nurses and pharmacists) canaccess lot specific information about theindividual plasma sources thatcontributed to each product vial. TheGrifols PediGri® system provides fulltraceability from donation to finalproduct.

Grifols’ PediGri® has been available inEurope for nearly a decade and will nowbe made available for all Grifols’ plasmatherapies marketed and sold in the US.

Excerpted from Grifols News Release,August 6th, 2008.

Octapharma Agrees to Acquire 33Plasma Centers Throughout the U.S.from International BioResources

Excerpted from Octapharma’s News Release August 5, 2008.

Talecris Enters into Definitive MergerAgreement with CSL

Data Published in Journalof Clinical ImmunologyShow Privigen™DemonstratesEffectiveness andTolerability in Patientswith PrimaryImmunodeficiencies

New L-Proline Stabilized ImmuneGlobulin Intravenous (Human) 10Percent Liquid can be stored atroom temperature, offeringconvenience to healthcareprofessionals.

Data published online in thecurrent edition of Journal ofClinical Immunology demonstratesthat PrivigenTM, the new liquidimmune globulin intravenous(human) 10 percent product fromCSL Behring, is effective and well-tolerated in patients with PrimaryImmune Deficiencies (PI).

Excerpted from CSL Behring NewsRelease September 25, 2008.

People with PI require IGIV on a regular basis and without regular treatments,which can be disrupted in the often complex and challenging health insuranceenvironment, PI patients can suffer from serious infections and illnesses. Forthis reason, Talecris developed the Gamunex Connexions Certificate Program,to help ensure that patients can temporarily continue to receive their therapyduring times of uncertainty.

To qualify for the Gamunex Connexions Certificate Program, a patient musthave third-party, private health insurance as their primary health insurance andbe using Gamunex regularly for PI or ITP. Full details about the program areavailable by calling 1-888-263-8243.

Excerpted from Talecris Biotherapeutics News Release October 15, 2008.

Talecris Biotherapeutics Helps Patients Receive GamunexDuring Lapses in Private Insurance Coverage

ADVOCATE | 9

CLOSING DOORSON SCID,OPENING HOPEON TREATMENT

This past July, the SCID (Severe Combined ImmuneDeficiency) Community hosted an international conferencefor families who are affected or have been affected by SCID.The conference was held in the beautiful Blue RidgeMountains of Virginia, at Wintergreen Resort and Spa. Thisis the first such event where families with ALL forms of SCIDwere invited to attend. I am happy to say we had over 140people in attendance, with families coming from as far awayas California and New Zealand! The event provided awonderful opportunity for patients, families, children,physicians and industry to come together and learn moreabout this devastating disease, and the quality of life issuesthat go along with successful treatment. The adulteducational sessions offered new, up-to-date informationfrom top experts in the field. The children’s programs werepacked with fun-filled activities for all ages, whichemphasized teamwork, cooperation, and acceptance. The

Heather Smith congratulates 14-year-old Daniel Fratto, winnerof the logo contest. His drawing was chosen to be the logo forthis years conference t-shirt. He did an excellent job!

The Petrelli and Walsh

families “put a face on

primary immunodeficiency

disease” and thanked the

donors and staff for their role

in providing lifesaving plasma

to our patient community at

BioLife Plasma Services in

DeKalb, Illinois.

Many thanks…

weekend was an incredibly special time, providing hope, support, and,invaluable information to all who attended.

Many thanks to our excellent presenters who not only came prepared toshare the most current information, but also stayed for the weekend andmade themselves available to families for extended conversations. Ourthanks to: Barb Ballard, Dr. Mei Baker, Dr. Rebecca Buckley, Dr. FabioCandotti, Dr. Morton Cowan, Joie Davis, Cheryl Deep, Carol AnnDemaret, Dr. Joanna Fanos, Dr. Alan Flake, Dr. Terry Harville, Dr. HarryMalech, Lindsay Middelton, and most importantly, Dr. Jennifer Puck.

A special thanks to IDF for their generous contribution toward thisevent. Without the help of our wonderful sponsors, this importanteducational eventcould not havebeen possible.We thank youand look forwardto collaboratingagain for futureconferences.

Please check outthe IDF SCIDInitiative sectionof the IDF Website for futureconferenceinformation.

By: Heather Smith, IDF Volunteer and SCID Conference 2008Coordinator

Marcia Boyle, Barb Ballard, Carol Ann Demaret andKatherine Canion at the Survivor themed dinner at theSCID Conference

10 | FALL 2008

VOLUNTEERSACROSS theCOUNTRY

In September, the IDFFamily ConferenceDay in Shrewsbury,Massachusetts providedwonderful opportuni-ties for youth to con-nect through gamesand activities in theIDF Kid’s Club and theTeen Track Program.

Susan Branch hosted “A Little Texas in Rhode Island” barbecue to benefit IDFon August 29, 2008. The successful event included a silent auction, raffle, andlive music, and raised nearly $5,000. Susan, shown on the right, was assistedby IDF volunteer Betty Gordon. Thanks to Susan, Betty, and all of the otherwonderful volunteers for their outstanding efforts!

Allissa Rastad staffed the information table at a blood drive in honorof her brother Alec. Her mother, Towma Rastad, an IDF volunteerin Massachusetts, worked with the Red Cross to coordinate the event

that did double duty as a fundraiser and helped spread awarenessabout primary immunodeficiency diseases and IDF.

These young ladies participated in the IDF Kid’s Club at theIDF Family Conference Day in St. Paul, Minnesota in July.

ADVOCATE | 11

Gifts In Honor Of

Joyce Barranco

Laura Bekier

Dr. Mary Ellen Conley

Noelle Drews

Brenden Denver

Alli, Dan & Jamie Fillery

Joshua Osborn

Joyce Shapiro

Aidan Walsh

Bill York

Dina Farrell

W I T H G R A T I T U D E

YOUR GIFT

Yes, I would like to give $________________________ to IDF every month in 2009.

Please begin charging my credit card (Visa / MasterCard) on (month)__________________________, 2009.

Name as it appears on credit card: __________________________________________________________________________

Credit Card Number: _____________________________________________________________________________________

Expiration Date: _______________________ 3-Digit Security Code: ____________

Signature: _______________________________________________________________________________________________

YOUR INFORMATION

Name as you’d like to be recognized: _________________________________________________________________________

Address: _________________________________________________________________________________________________

City, State, Zip: ___________________________________________________________________________________________

Email Address: ___________________________________________________________________________________________

Telephone Number: _______________________________________________________________________________________

These donations help IDF to improve the diagnosis and treatment of patients with primaryimmunodeficiency diseases through advocacy, education and research. If you would like tomake a donation, please go on our Web site, www.primaryimmune.org and click the “pleasedonate today” picture in the top right corner. You can also contact us in any of thefollowing ways:

Phone: 800.296.4433 or 410.321.6647E-mail: idf@primaryimmune.orgMail: IDF, 40 W. Chesapeake Avenue, Suite 308, Towson, MD 21204

Gifts In Memory Of

Mandy Abfalter

David Carey

Margaret Evans

Amy Fisher

Clara Frith

Suzanne Knight

Marv Mareck

Kristin Anna Martin

Betty McNeil

Josephine Rosemary Papa

Don Quicksilver

Marsha Ralich

Carla Richards

Addison Trillo

�

Small Gifts Add UpThat’s why IDF has created a new “Monthly Giving” Program. At your request, IDF can automatically charge your credit card eachmonth. Imagine what a difference you can make to IDF by giving monthly. For example, if you contribute $25 each month, at the end ofthe year your total contribution to IDF will be $300! You can receive points or miles on your credit card, and you don’t have to rememberto send a check. Gifts to IDF are tax-deductible, and IDF will be very grateful!

All you need to do is fill out this form and send it to IDF!

40 West Chesapeake AvenueSuite 308Towson, MD 21204

IMMUNE DEFICIENCYFOUNDATIONBOARD OF TRUSTEESMarcia Boyle, Chair and President

Barbara Ballard, Secretary

Douglas R. Bell

John Boyle, PhD

Rebecca H. Buckley, MD, ChairMedical Advisory Committee

Lisa Codespoti

Carol Ann Demaret

Steve Fietek

Terry Halper

Robert LeBien

John Seymour, PhD, LMFT, Vice Chair

Jerry Winkelstein, MD

Non-Profit Org.U.S. Postage

PAIDSouthern MD

Permit No. 305