SPONDYLITISPLUSspring 2007

MICHAEL WARD, MDAT ACR

CELEBRATINGTHE KAUTZ FAMILY'S

LONGSTANDINGSUPPORT

HOW YOU CANHELP ADVANCE

GENETIC RESEARCH

UPFRONT

SPONDYLITIS

ASSOCIATIONOFAMER

ICA

SPONDYLITIS ASSOCIATIONOF AMERICAP.O. Box 5872Sherman Oaks, CA 91413Phone (818) 981-1616Fax (818) 981-9826e-mail: info@spondylitis.orgwww.spondylitis.org

SAA MISSION

To be a leader in the quest to cure

ankylosing spondylitis and related

diseases, and to empower those

affected to live life to the fullest.

BOARD OF DIRECTORS

David Hallegua, MD, ChairBrian MacKenzie, Vice ChairJeff Horn, TreasurerHon. Ellen Carroll, SecretaryKimberly CooperLeslie Kautz, CFACharlotte HowardAnn Kittell HowatMichael Supancich, MDRobert Ulrich, PharmD

HONORARY BOARD MEMBERS

Rico BrognaVal HalamandarisMimi Kennedy

EXECUTIVE DIRECTOR

Katherine Culpepper

ASSOCIATE EXECUTIVE DIRECTORAND PROGRAMS DIRECTOR

Laurie M. Savage

DIRECTOR OF DEVELOPMENT

Susan L. Jones

SPONDYLITISPLUSPublished four times a year

Laurie M. Savage, Editor-in-Chief

Kristina Anderson, Contributing Writer

Susan Jones, Contributing Writer

Diann Peterson, Contributing Writer

Design by Cause Communications

Printing by PMF Productions, Inc.

Content is for informational purposesonly. The SAA does not endorse orrecommend any medications or productsfor spondylitis, and always advises thatyou seek the counsel of a physicianbefore initiating any treatment forspondylitis. Annual subscriptions areavailable with a membership.

MY FIRST SIX MONTHS AT SAA HAVE BEEN VERY BUSY.SAA’s calendar of scientific meetings, Patient EducationSymposiums and support groupmeetings has provided several oppor-tunities for me to observe and participate in the various programs.

In November, the SAA staff and I traveled to Washington DC to participate inthe annual scientific meeting of the American College of Rheumatology. Thisyear’s meeting brought together more than 10,000 clinicians and researchersfrom around the globe to share information and foster advances in rheumatology.

While in the DC area, we presented a Patient Education Symposium that broughttogether more than 100 SAAmembers who spent the day interacting with some ofthe leading specialists in the field of spondylitis. That same week, we held ourannual Medical & ScientificAdvisory BoardMeeting. It was very inspiring to meetand interact with the many talented physicians and researchers dedicated to findingthe cure and advancing the treatment of AS and related diseases.

Later in November, I had the opportunity to visit San Diego and attend a SupportGroup Meeting led by Mike Supancich, one of SAA’s National Board members.I was impressed by the amount of helpful information and tips shared among themembers of the group.

As I indicated in my first column, in addition to SAA’s focus on key researchprojects, we plan an aggressive calendar of Patient Education Symposiumsthroughout the year. Arrangements have been finalized for a presentation inChicago on March 10th, and we’re now confirming plans for a symposium inLos Angeles in May. The Los Angeles meeting will coincide with SAA’s firsttraining session for group leaders from among our network of support groupsacross the country. In addition, later this summer, we will be releasing addit-ional Fall and Winter dates for meetings in other key metropolitan areas.

I hope you find this issue of Spondylitis Plus informative and useful.

Katherine CulpepperEXECUTIVE DIRECTOR

2 spring 2007 SPONDYLITIS PLUS

4 | TASC INTRODUCESNEW COORDINATOR

6 | IN FOCUSREPORTING HIGHLIGHTSFROM ACR

10 | IN FOCUS

UPDATE FROM THE SOCIAL

SECURITY ADMINISTRATION

FEATURES

FOCUS

FOCUS

RESEARCH

ARTICLES

5 | CIGARETTES & ANKYLOSING SPONDYLITISMAKING THE CASEAGAINST SMOKING

8 | CELEBRATING SAAsFORMER EXECUTIVE DIRECTOR

9 | CELEBRATING THE KAUTZ FAMILY'SLONGSTANDING SUPPORT

12 | CAR DRIVING WITH ASHOW SAFE IS IT?

ALSO IN THIS ISSUE

5 | HOW YOU CAN HELP ADVANCEGENETIC RESEARCH

Dear SAA,I really enjoyed reading Dr. Maksymowych’sarticle regarding bisphosphonates. It is veryinteresting. Several months ago, I receiveda newsletter for men who have prostratecancer, in which it recently warned of a rareside effect of using IV bisphosphonates.Could Dr. Maksymowych please shed somelight on this issue?

JAKE SIMMONSLake Placid, NY

Dr. Maksymowych responds: (reprinted from2006) the issue raised by this reader describesa report of 63 patients with bone malignancythat developed aseptic necrosis of the jaw –essentially death of the bone. It should beborne in mind that additional factors such aschemotherapy, recent dental surgery, steroids,and oral infections could have been a factorand were present in most of these patients.No similar cases have been identified in otherlarge scale and long-term studies of bisphos-phonates. Furthermore, this complication wasnot observed in pre-clinical studies wherehigher doses were used than currently used forosteoporosis. There is now safety data on anestimated 20 million patient-years for one bis-phosphonate, alendronate. It is important tocontinue to observe and carefully evaluate anddistinguish chance associations and causalrelationships.

Dear SAA,I am pleased to send you this donation,though I know that it is small, I hope that itwill help in someway. I raised this money

by playing my violin and by singing in thetown square of Chautauqua, New York thissummer. Because my dad has spondylitis, Iwanted to help find a cure, and since my BatMitzvah is coming up, I decided to do thisfor one of my mini community projects. Ireally worked very hard to earn this moneyand I hope that it will help.

JAINIE WINTER(address withheld)

Editor’s note: we received this wonderfulnote by mail along with an accompanyingdonation check in the amount of $54.25Thank you, Jainie.

Dear SAA,I really appreciate the information I receivethrough your magazine and web site. I’m a62 year old male who has had ankylosingspondylitis more than half my life (the onsetwas in about 1972). I’ve suffered much painover all those years, and during the past5-6 years have become increasingly bentforward. I learn to cope as it progresses anddon't let it stop me, but it does get frustratingat times (particularly now as I can’t do manysimple things I always did in the past – likelook up to put something on a shelf or dosome maintenance project around my house).

Having just moved halfway across the US(from Washington, DC to Kansas City, MO),I now have to find a new doctor to assist me.I’m using your online list/recommendationsin attempting to select one. Please keephelping us with all relevant information. It

may not straighten my spine, but sometimesit helps to know I'm not alone, and to findout the latest information.

I believe it’s important for everyone to keepa positive attitude. I hope others who sufferfrom ankylosing spondylitis or any otherserious ailment also can learn to accept that,no matter how bad it may seem, there areothers who suffer from even much worseailments. Over the years I’ve watched closefamily and personal friends die from thoseworse ailments. Mine's not nearly that bad.

To all of the SAA staff and volunteers,thanks for being there. And thanks for pro-viding a source of information about what'sgoing on. It’s very important. Folks like mecan use whatever support and informationyou can give us.

Take care,

KENT HOWERTONKansas City, MO

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LETTERS TO THE EDITORDear Readers: We want to hear from you,whether it be informative, uplifting, or agripe you need to express. Include your fullname, address and daytime phone number.

We reserve the right to edit for space and clarity.

Please send letters to:Laurie.Savage@spondylitis.orgLetters to Editor/SAAP.O. Box 5872, Sherman Oaks, CA 91413

LIVING WITH SPONDYLITISLIVING WITH SPONDYLITIS

www.spondylitis.org 3

In recent years, a great deal of progress has been made in shedding light on the potential causes of AS and in seeing the advent of improvedtreatments that show tremendous hope for people with AS and related diseases. Much of this is due to the work of dedicated researchers, butalso to people like you who have participated in the NASC study, (The North American Spondylitis Consortium), which evolved from the ASFamily Genetic Project. Data generated in that project include the discovery of regions on chromosomes that further our understanding ofsusceptibility toward AS. In addition, the data suggest that genes may play a significant role in severity and outcomes of the disease. New and moreestablished theories are being explored in regard to the potential relationship between microbes, genes--particularly B27--and inflammatorymechanisms in the gut/blood barrier that might be involved in triggering AS and enteropathic arthritis.

Introducing Omolade Ogun,the SAA’s study Coordinator for TASC

Omolade Ogun was born and raised in Lagos, Nigeria. Sheattended the College of Medicine, University of Lagos, whereshe completed a six-year combined Bachelors of Medicine/Bachelors of Surgery degree. Subsequently, she trained as an intern atthe Lagos University Teaching Hospital in 2001. In 2002, she moved toLos Angeles. She has volunteered at various healthcare facilitiesin Southern California. She works part time as a Health Screener,performing screening activities at health fairs, where she has been ableto use her medical knowledge to educate people on health issues. Herpassion is to educate patients and treat them with the respect and individ-uality that allows them to make some of the most important decisions intheir lives.

Omolade worked at the David Geffen School of Medicine at UCLA inWestwood, California, as Clinical Research Associate in a major multi-center, double blind, placebo controlled study to assess Lung Function

Decline in Chronic Obstructive Pulmonary Disease patients taking the trial medication. She credits her mentor, Donald Tashkin, MD, and the timeshe spent at the David Geffen School of Medicine for inspiring her to dedicate her time to clinical research. She also strongly believes thatenergetic and creative dedication to clinical research leads to outstanding biomedical achievement that translates to significant changes in clinicalsettings. This is what led her to join the Spondylitis Association of America as Study Research Coordinator in October 2006.

The Interrelated Projects of the Grant1. To identify the genes that cause AS(Matthew Brown MD, John D. Reveille MD)

2. To identify the genes that predict severityand outcomes(Michael Weisman MD)

3. To identify the spectrum of related diseasesin family members of people with AS(John C. Davis MD MPH)

4. To determine how the genes interact witheach other(Momiao Zhong PhD, Xioudong Zhou MD)

4 spring 2007 SPONDYLITIS PLUS

CALL TO ACTION: GENETIC RESEARCH NEEDS YOU!

Update on TASC (“Triple A” Spondylitis Consortium)

WE NEED YOUR HELP!A Call for Research Participants

� People who have been diagnosed with AS� Non affected spouses of people with AS� Non affected friends of people with AS

If this describes you, and you would like to help, andhave not already participated in an AS Genetic Study,please call: Omolade Ogun (800) 777-8189 x224 oremail info@asresearch.org

The SAA is grateful to close to 100 people with aconfirmed diagnosis of AS who have contacted us sinceNovember to find out how to enroll in the study.

RESEARCHPhoto:ChrisMiller

www.spondylitis.org 5

Many people, most of them smokers,will not read this article furtherthan this because they thinkthey’ve heard it all before. Patience please! Ifyou have AS and smoke, you really need tothink hard about giving up, even more thanpeople without AS. The reason is becausethere are many factors peculiar to AS thatsmoking detrimentally affects.

Why write this article now? Because we havejust analyzed the data from the first 6 monthsof our AS Specialist Clinic in Brisbane, andthe standout finding was that AS patients whosmoke had far worse disease activity thanthose that do not, with a mean BathAnkylosing Spondylitis Disease ActivityIndex which was 50% worse than non-smokers. That’s a huge difference.

What are the effects of smoking in AS?

• Smokers are more likely to develop AS.

• AS is associated with a 50% increase inmortality rate compared with age- andgender- matched people without AS,mostly due to cardiovascular disease.Smoking will exacerbate this.

• AS is commonly associated with lungdisease. In a recent study 40% of ASpatients were found to have significantlung abnormalities on close examina-tion. Also, because AS leads torestriction of chest wall movement dueto fusion of the thoracic spine and ribjoints. AS patients have less res-piratory “reserve” than those withoutAS. So if you smoke and do even moreharm to your lungs, then you willdevelop respiratory failure much fasterthan people without AS.

• AS commonly causes osteoporosis.People who smoke are twice as likelyto develop hip fractures than those whodon’t, so why add another risk on topof the risk you have with your ASanyway?

• Smoking is associated with stomach

ulcers. AS patients are at increased riskanyway of stomach ulceration throughNSAID usage. So smoking just addsanother risk.

• If you get smoking-induced chronicbronchitis, you may be excluded fromreceiving TNF-blocker treatments,which are extremely effective in AS.

There are lots of other reasons why youshouldn’t smoke which apply generally andare not specific to AS, such as:

• It causes a wide range of cancers

• It causes heart attacks, strokes andperipheral vascular disease (leadingsometimes to the need for amputations)

• It costs a lot of money

• It makes you smell bad

So what can you do to stop smoking? Here aresome tips to help you quit successfully.

• Set a date to quit. Choose a date whenthere will be a low amount of pressureon you, two to three weeks from now.

• Plan for the most risky times. Planactivities that will not expose you tosituations where you will be tempted tosmoke.

• Enlist the support of your friends andfamily.

• Hold a clean up ritual. Clean cigarettesout of your car, handbag, briefcase andhouse. Get rid of ashtrays and lighters.

• Think of yourself as a non-smokerfrom the moment you quit.

• Understand withdrawal symptoms.These are reactions that your body mayexperience as it flushes itself ofnicotine and other chemicals. Think ofthese as recovery symptoms. Somerecovery symptoms will come and goover a period of a few days, and mostare gone within two to three weeks.Emotional symptoms, such as anxietyand irritability, are closely tied to thephysical reaction of your body as thenicotine leaves your system.

• Remember the 4 ‘D’s.’�Delay acting on the urge to smoke.After five minutes, the urge tosmoke weakens and your resolve toquit will come back.

�Deep breathe. Take a long slowbreath in and slowly out again.Repeat three times.

�Drink water.

�Do something else. Take your mindoff smoking by taking action.

• Reward yourself. Put aside the moneyyou would have spent on cigarettes in ajar – you may be surprised by theamount of money you can save.

• Remember, having “just one” will hurt.This is the way that most people goback to smoking.

• If you have a relapse, don’t despair anddon’t give up on your plans to quit.Most people who have successfullyquit smoking for good have madeseveral serious attempts. Every daythat you have spent smoke-free makesyour body healthier and helps to breakyour habit and weaken your addiction.

Do something to help yourself. Stop smoking!

CIGARETTE SMOKING AND ANKYLOSINGSPONDYLITIS By Professor Matthew Brown, Princess Alexandra Hospital, Brisbane

LIVING WITH SPONDYLITISLIVING WITH SPONDYLITIS

The annual ACR scientific meeting provides an opportunity for pre-publication examination and review of work conducted by researchers over thecourse of the previous year. Over 100 studies presented at this year’s ACR were related to ankylosing spondylitis and other forms ofspondyloarthritis. The abstracts from the meeting provide us a unique opportunity to report on the considerable work that is being done, both in theU.S. and worldwide, to develop better treatment options and, ultimately, to find the cure.

On the Saturday prior to the opening of the scientific meeting, SAA sponsored a Patient Educational Symposium that brought together 160 patients,family members, friends and SAA supporters with some of the leading experts in the field of spondylitis. Drs. John Reveille and Michael Ward andPhysical Therapist, Ms. Victoria Gall presented lectures on advancesin research, workplace and disability issues, and disease management.In the convention center’s exhibition area, SAA’s booth welcomedhundreds of physicians and researchers who eagerly signed up toreceive information about our programs and services, as well asbrochures and educational materials to assist them with theirspondylitis patients

6 spring 2007 SPONDYLITIS PLUS

IN FOCUS

The 71st Annual Meeting of the American College ofRheumatology (ACR), the professional association ofrheumatologists in the United States, was held in ournation’s beautiful capital city of Washington, D.C. fromNovember 8th through November 11th, 2006. Thecombined attendance of the ACR and AlliedRheumatology Health Professional (ARHP) members wasover 13,000, making it a record-breaking year for

participation in this important scientific meeting devoted to the rheumatic diseases.

Reporting from the

American College of

Rheumatology Scientific

Meetings, 2006

Authors:Walter P. Maksymowych and colleaguesfrom Europe and Canada

Objective: Researchers in this study sought to identify bloodserum biomarkers as predictors of patients at risk forstructural damage progression in AS.

Results: Serum matrix metalloproteinase-3 (MMP-3) – anenzyme, was found to be elevated in two-thirds of patients whowent on to further radiographic damage in AS.

Conclusion:Dr. Maksymowych and his colleagues strongly sug-gest that the results of the study demonstrate that testing for thisenzyme could be a useful and inexpensive screening tool forpatients with AS to determine their likelihood of going on tomore severe disease.

Serum Matrix Metalloproteinase 3 is an IndependentPredictor of Structural Damage Progression in Patients

with Ankylosing Spondylitis (AS)

Authors: Hildrun Haibel and colleagues, Germany

Objective: There has been an ongoing debate among some clini-cians for many years with regard to the use of Methotrexate(MTX) in AS patients. The goal of this study was to examine thepotential therapeutic effect of MTX 20 mg given weekly byinjection under the skin in active AS.

Method: 20 patients were enrolled in the study for a total of 16weeks. All of the patients were experiencing active disease asso-ciated with spinal pain and 7 of whom also had peripheral jointinvolvement.

Results: The researchers reported that 35% of the patients hadsome response to the treatment, but none achieved partialremission of the disease using the ASAS scoring system. Sevenpatients experienced a non-significant decrease in the number ofswollen joints.

Conclusion: The researchers of this study concluded that MTXdid not demonstrate a benefit for the axial (spinal) symptoms inpatients with active AS beyond an expected placebo-response.Thus, in spite of current practice, they recommended that MTXnot be used for this indication.

Methotrexate 20 mg (injected under the skin) in AS –No Efficacy Over 4 Months Treatment in an Open

Label Pilot Study

A PRIMER ON HLA-B27 IN ANKYLOSING SPONDYLITIS A group of genes on chromosome 6 codes for the HLA (human leukocyte antigens)antigens play a majorrole in susceptibility and resistance to disease. Specific HLA antigens influence the development of many common disorders. Some of these disorders, whichinclude ankylosing spondylitis (AS), are autoimmune related and inherited in a multifactorial manner. When a person has the specific HLA antigen type associ-ated with the disease, he/she is thought to have an increased chance to develop the disorder. The HLA antigen associated with AS is called B27. People with theHLA-B27 antigen are thought to have an increased chance (or "genetic susceptibility") to develop AS; however, it is important to understand that a person with-out this antigen may also develop AS. This means HLA antigen testing is not diagnostic or accurate for prediction of the condition.

www.spondylitis.org 7

Serum Retinol (vitamin A) levels are Decreasedin Ankylosing Spondylitis and are Independent

of Disease Activity

Authors: Finbar D. O’Shea, Robert D.Inman and colleagues,Toronto, Canada

Purpose: Vitamin A (retinol) plays an important role in bonestructure and function, and treatment with retinoids has beenassociated with bone abnormalities that mimic certain diseasesthat include spondyloarthritis. In addition, in mice, the lack ofthe gene CYP26A1 has shown to cause symptoms that mimicthose of retinol over-dosing.

The specific aims of this study were: 1. to compare serum(blood) levels of retinol betweenAS patients and unaffected con-trols; 2. to correlate retinol levels with disease activity in AS; 3.to identify any genetic association with the CYP26A1 gene.

Methods: The researchers tested for the genetic marker, andmeasured serum levels of retinol in both AS patients and con-trols. They also administered tests to the AS group in order toassess disease activity.

Conclusion: The results of this study suggested that contrary toexpectations, the serum level of retinol in the AS patient waslower, as a group, than that of the unaffected control group. Theresearchers also uncovered the fact that retinol did not impactdisease activity. Furthermore, although genome-wide scans haveimplicated p450 genes, such as CYP26A1, in the genetic suscep-tibility to AS, the researchers caution that, to date, no biologicalbasis for such an association has been resolved. This study wasnot able to yield a distinct genetic association of CYP26A1 withAS, although researchers believe that that further analysis of thegenetic determinants of retinol metabolism in AS are warranted.

Purpose:TNF inhibitor therapy exposes a person to a higher riskof contracting a mycobacterial infection. Hence, the reason thatTuberculin Skin Tests (TST) are recommended prior to startingTNF Inhibitor therapy to screen for latent tuberculosis infection(LTBI). The researchers who conducted this study reviewed theresults of yearly TST testing at one institution to evaluatewhether annual testing of patients on TNF Inhibitor therapy canbe recommended.

Conclusion: Retesting of 379 patients receiving TNF Inhibitortherapy revealed LTBI in 3.5%. One patient who previously hadtested negative for a mycobacterial infection (MAI) developedsymptoms and cultures led to a new diagnosis of MAI. Hence,the researchers who conducted the analysis of the data for thestudy, suggested that annual TST is warranted in order to catchprevious false negatives as well as new infections in patientswho are receiving TNF Inhibitor therapy.

Screening and Prevention of Mycobacterial Infectionsin Patients taking TNF Inhibitors; the Value of Annual

Tuberculin Skin Testing

Juvenile-Onset Ankylosing Spondylitis versus Adult-Onset Ankylosing Spondylitis for the PSOAS Cohort

The Study: It is recognized by rheumatology professionals thatannual influenza shots are recommended for individuals (adults)who have immuno-deficiencies, which include those that aredrug-induced, such as TNF Inhibitor therapies. The aim of thestudy was to evaluate whether and to what extent SID patientssought vaccination.

Conclusion: The study results suggested that there is a low vac-cination rate in SID patients. Two primary reasons were associ-ated with non-compliance: 1. failure to bring it up (by the healthcare professional) 2. patient’s fear of side-effects.

The study concluded the importance of improving patient andphysician awareness with respect to the vaccination of patients athigh risk of influenza complications.

Low Influenza Vaccination Rate among AdultsReceiving Immunosuppressive Therapy for Systemic

Inflammatory Diseases

Authors: Lianne Gensler, Michael Ward, John D. Reveille,Thomas Learch, Michael H. Weisman, John C. Davis,

Houston, Tx; San Francisco, CA; Los Angeles, CA; Bethesda,MD. (Editor’s note: Dr. Ward is featured on the cover of thisissue of Spondylitis Plus. He presented at a concurrent SAApatient educational symposium, highlights of which will be

featured in the summer issue of this magazine.)

Purpose: Previous studies have suggested that patients withchildhood onset of AS have in general more severe disease andpoorer outcomes than people with adult onset. In this studyresearchers evaluated the clinical and radiographic differencesbetween the two groups. Patients in the study had approximately20 years of disease duration.

Methods: 402 patients with a confirmed diagnosis of AS wereenrolled in the study.

Conclusion: The researchers found that in general when patientswith childhood onset of AS are compared to those with later onsetin adulthood, those with childhood onset demonstrated less spinaldisease, more hip involvement that required a hip replacement, andthat the juvenile onset group was comprised of more women.

Editor’s Note: Each of these studies was published in abstractformat and presented at the ACR Scientific Meetings. These data andconclusions should be considered to be preliminary as they have notyet been reviewed and published in a peer-reviewed publication suchas the ACR official journal, which is entitled Arthritis & Rheumatism.

IN FOCUS

8 spring 2007 SPONDYLITIS PLUS

Tribute Dinner HonoringJane Bruckel

Once in a lifetime, an organization has the opportunity to honor its Co-founderand retiring Executive Director, the person whose dreams gave the organizationlife, purpose and vitality. The Spondylitis Association of America had thatopportunity this year – to honor Jane Bruckel and celebrate her 23 years of dedicationto improving the lives of spondylitis patients everywhere.

This last September, SAA hosted the Jane Bruckel Tribute Dinner at the Jonathan BeachClub in Santa Monica, California. This gala event brought the spondylitis communitytogether to pay tribute to the woman who changed the face of spondylitis in this country.

When diagnosed as a young nurse there was not a single patient resource available forpatients to learn about the disease. Jane Bruckel was determined to change that. Today,SAA publishes thousands of educational materials for patients and physicians alike,holds local and national symposiums and provides seed money for the most challengingarea of all – spondylitis research – which has brought about multi-million dollarfunding from the prestigious National Institutes of Health.

Masters of Ceremonies and SAA Board Members David Hallegua and Brian MacKenziepresided over an evening of tributes, testimonials and reminiscences in honor of Jane’s bodyof achievements. Guest speakers and presenters included Drs. John Reveille,Asim Khan and

David Yu of SAA’s Medical andScientificAdvisory Board; Former BoardPresidents Steve Saltzman and TomWest; and Board Members Ann Howatand Bob Ulrich.

L.A. City Council Member Jack Weisswas on hand to present Jane with aCertificate of Appreciation from the cityof Los Angeles in recognition of her life-time of dedication to the spondylitiscommunity. The evening also featured amusical performance by Gravity and asong written especially for Jane by inter-national singer and songwriter, HaroldPayne.

Thanks to the commitment of onewoman, supported by thousands of SAAmembers and friends, many spondylitispatients now live more active, morerewarding lives. The Jane Bruckel TributeDinner provided a small opportunity forthe spondylitis community to show herour appreciation.Top: Los Angeles City Councilmember Jack Weiss presents Jane with

a Certificate of Appreciation from the City of Los Angeles.Center: Jane and Harry Bruckel with loyal SAA supporters, Jean, Floydand Damon Kvamme.Bottom: International singer/songwriter Harold Payne performing atribute song he wrote especially for Jane.

FUNDRAISING

www.spondylitis.org 9

We recently received a generous gift to the Jane BruckelResearch Fund from the Kautz Family Foundation. TheKautz Family Foundation has been a long-time contributor tothe Spondylitis Association of America (SAA). Through the years, theKautz Family has provided significant funding in the areas of advocacy,research and organizational expansion. In 1998, the Kautz Family’s sup-port was instrumental in helping SAA gain funding from the NationalInstitutes of Health (NIH) to co-sponsor a major two-day scientific sym-posium – the first symposium onAS at the NIH. The symposium broughtscientists and researchers from related fields for a cross fertilization ofknowledge and ideas with AS researchers. It was an important catalyst forSAAreceiving funding from the NIH for the Family Genetic Study and pro-viding SAA with the opportunity to recruit key researchers to join theNorth American Spondylitis Consortium and participate in the Study.

In 2004, Leslie Kautz, daughter of Carol and James Kautz, joined SAA’sBoard of Directors because she “wanted to join in its passion andcreativity for making lifebetter for people with AS."Leslie has seen first-handthe effect that AS can haveon a person’s life. In the1970s, she remembers theconfusion and uncertaintyher family experiencedwhen her brother Danielsuffered the pain of ASwithout knowing what itwas. If the SpondylitisAssociation had existedthen, Leslie believes thatthe anguish of not knowingand the delay in herbrother’s diagnosis couldhave been avoided. She alsoremembers how informationfrom the SAAnewsletter gother brother started on hispath to controlling thedisease.

Today, the entire Kautzfamily is committed to theSpondylitis Associationand we extend our heartfeltgratitude to them for theirgenerous support and dedication to helping SAA advance research whileremaining the largest single source for people affected by AS and relat-ed diseases.

Thank you!

Kautz Family Foundation

Through the years, the

Kautz Family has provided

significant funding in the

areas of advocacy, research

and organizational

expansion.

The extended Kautz Family gathers in Los Angeles.

FUNDRAISING

IN FOCUS

10 spring 2007 SPONDYLITIS PLUS

Social Security Cost ofLiving Adjustment (COLA)Update By Attorney Richard I. FeingoldNew Ruling Means Changesin the Assessment of Disability Claims

The Cost of Living Adjustment (COLA) for 2007,released by the Social Security Administration(SSA), will be 3.3 percent. This means that forthe more than 53 million Americans whoreceive monthly benefits from the SSA, thosebenefits will increase 3.3 percent in 2007.

By the NumbersIn 2007, the 3.3 percent COLA increase means that:

• Supplemental Security Income (SSI) benefits will increase to$623/month for individuals, while the average Social SecurityDisability Insurance (SSDI) benefit amount for a disabledworker, spouse and one or more children will be $1,646/ month.Remember, SSI benefits are for a disabled individual only,whereas SSDI benefits may also apply to the spouse and childrenof a disabled worker.

• The Substantial Gainful Activity (SGA) amount will increasefrom $860 to $900 gross earnings per month. Earning over thisamount may prevent one from filing for disability benefits or resultin a loss of some or all benefits.

• The Trial Work Period (TWP) amount will increase from $620 to$640 gross earnings per month. During a TWP, a person receivingSSDI benefits is able to return to work, to test their ability to dowork, on a trial basis for nine months.

IntroductionBy far, the most important evidence that SSA examines in a disabilityclaim is the medical evidence. This is somewhat obvious, because thedefinition of disability requires that there exist a “medically deter-minable impairment.”

Medical evidence not only includes objective medical evidence, such asmedical signs and laboratory findings, but also other evidence frommedical sources, such as the medical history, opinions, and statementsabout treatment received. Statements that a disabled individual makesabout his or her impairments are also considered, but they must becorroborated by the medical evidence in order for them to be foundcredible and be given weight.

To help interpret the medicalevidence, and to give bindingguidance on disability andother benefit programs, SSApublishes several Rulings eachyear. In 2006, SSA published aRuling entitled, “ConsideringOpinions and Other EvidenceFrom Sources Who Are Not‘Acceptable Medical Sources’in Disability Claims;Considering Decisions onDisability by OtherGovernmental and Non-governmental Agencies.”

In part, this Ruling clarifies howSSA considers opinions fromsources who are not considered

“acceptable medical sources.” The Ruling recognizes that with the growthof managed health care and the emphasis on containing medical costs,many people get much of their care from health care practitioners who arenot doctors. These sources include nurse practitioners, physician assistantsand licensed clinical social workers. This Ruling gives guidance on howmuch weight SSAwill give to their opinions.

Q & AQuestion:Who does SSA consider to be an “acceptablemedical source”?

Editor’s Note:

In the November/

December 2005 issue

of Spondylitis Plus,

we published the Social

Security Administration’s

2006 Cost of Living

Adjustment figures.

Here are some updated

numbers for 2007

Answer: In general, “acceptable medical sources” include, for example,licensed physicians (medical or osteopathic doctors); licensed or certi-fied psychologists (including school psychologists); and licensedoptometrists, although SSA may need a report from a physician todetermine other aspects of eye diseases.

Question:What categories of non-acceptable medicalsources are there?

Answer: There are three categories of sources besides “acceptablemedical sources” considered under the new Ruling:

1. “Medical sources who are not acceptable medical sources” (forexample, nurse practitioners, physicians’ assistants, therapists,psychiatric social workers and chiropractors);

2. “Non-medical sources” such as teachers, counselors and socialwelfare agency staff acting in their professional capacity. Thesesources often have close contact with the individual and personalknowledge and expertise to make judgments about the impairment,activities, and level of functioning over a period of time.

3. “Non-medical sources” such as spouses, other relatives, friends,employers, and neighbors.

Question:Why does SSA draw a distinction between“acceptable medical sources” and other health careproviders who are not “acceptable medical sources”?

Answer: One reason is that only “acceptable medical sources” can give“medical opinions,” a judgment about the nature and severity of theimpairments and the mental and physical restrictions they cause. Inaddition, if a patient has had an ongoing treating relationship with amedical doctor, for example, that doctor’s medical opinion can be given“controlling weight,” which can result in a favorable disability determi-nation by SSA.

Question:What factors does SSA consider in deciding howmuch weight to give the opinions of medical sources whoare not “acceptable medical sources”?

Answer: The same factors that are used to evaluate the medical opin-ions of “acceptable medical sources” can be applied to consider otheropinions.

As stated in the Ruling, “These factors include:

• How long the source has known the individual and how frequentlythe source has seen the individual;

• How consistent the opinion is with other evidence;

• The degree to which the source presents relevant evidence to supportan opinion;

• How well the source explains the opinion;• Whether the source has a specialty or area of expertise related to theindividual's impairment(s), and

• Any other factors that tend to support or refute the opinion.”

Question: Is there ever a situation where the opinion of anurse practitioner or licensed clinical social worker couldoutweigh the opinion of a medical doctor?

Answer: It is important to keep in mind that although information fromthese “other sources” cannot establish the existence of a medicaldisease or illness, the information may be based on special knowledgeand provide insight into the impairment’s severity and how it affects anindividual's ability to function.

Under the new Ruling, it is possible for the opinion from a medicalsource who is not an “acceptable medical source” to outweigh the opin-ion of an “acceptable medical source,” if, for example, he or she has hadgreater contact with the patient and can provide better supportingevidence and an explanation of the opinion. This can be a great boon topatients who have limited contact with a medical doctor.

Editor’s Note We are grateful to Mr. Feingold forhis ongoing support via the SAA website www.spondylitis.org,where he graciously answers visitor questions on a dedicatedmessage board. Since 1986, he has been representing dis-abled persons in their Social Security disability claimsthroughout the United States. He a sustaining member of theNational Organization of Social Security Claimants’Representatives (NOSSCR) as well as a past Chair of theChicago Bar Association's Social Security LawCommit tee. He can be contacted by email at:Rich@FeingoldLawOff ices .com and through hiswebsi te at www.FeingoldLawOffices.com, or by phone at773.989.9899.

Disclaimer The information contained in this articleis provided as a public service, is general in nature, and doesnot constitute the rendering of legal advice or legal services.One should consult an attorney before making any decisioninvolving a legal matter, such as a Social Securitydisability claim.

www.spondylitis.org 11

New Social Security Ruling Means More EmphasisWill be Placedon Medical ProvidersWho are Not “Acceptable Medical Sources”

IN FOCUS

IN FOCUS

12 spring 2007 SPONDYLITIS PLUS

Ask someone with AS what their biggest fear is and many willanswer, “Getting into an automobile accident.”While there’s always been an emphasis on driving-safety features –good brakes, tires, seat belts, and air bags – when you start to factor in

ankylosing spondylitis, all is notequal. There is a lot at stake withfragile ankylosed spines and necksand that raises many questions.Should seatbelts be worn? Howshould headrests be best used?Airbags?.Dr. Nortin Hadler, a member of theSAA Medical Advisory Board, Pro-fessor of Medicine and Micro-b io logy / Immuno logy a t theUniversity of North Carolina andattending rheumatologist at UNCHospitals, graciously offeredSpondylitis Plus the input of Dr.Barry Myers, an expert on whiplash

and the biomechanics of the spine, on the use of seatbelts, headrests andairbags by drivers with AS.

THE ANKYLOSED SPINE IS INJURY PRONE

“These are not simple questions,” Dr. Myers thoughtfully said in e-mail.“The severely ankylosed spine is injury prone on very modest exposure.”

Dr. Myers, Senior Associate Dean for industrial partnerships andresearch commercialization at Duke University’s Pratt School ofEngineering, has extensively reviewed injury statistics and medicalliterature. He has concluded that aside from driving defensively andpurchasing the biggest, safest car possible, AS patients would be bestserved by not doing anything too out of the ordinary in their drivinghabits. “These will do more to decrease injury rates than other interven-tions,” he observed.

SEATBELTS AND THE “AIRBAG DILEMMA”

Dr. Myers said he “strongly recommended” the use of seatbelts despiteconcerns that an AS spine might not be able to withstand the sheering

force the belts might create in a crash. He warned that relying on anairbag to prevent injury, however, was way too risky. “Airbags have avery limited range of accidents that they are effective in, and headimpact with an ankylosed spine is devastating,” he cautioned. “Keepingthe vulnerable kyphosed spine out of the deploying bag is especiallyimportant.”

Dr. Myers also recommended that the headrest be set in a position thatminimizes the gap between the head and the rest, and also allows anadequate field of vision for the driver.

“I would not advocate retrofitting the design,” Dr. Myers said.

Finally, there are natural concerns among AS patients that if they wereto get into an accident serious enough to cause injuries, they could beat risk by emergency rescuers who do not understand the fragile natureof their backs and necks.

The SAA has done a yeoman’s job in advocating better training foremergency medical technicians,* although Dr. Myers noted that spinalprecautions were nonetheless pretty much standard procedure ataccident scenes.

ALL DRIVERS SHOULD WEAR SEATBELTS

Dr. Hadler also kindly provided Spondylitis Plus with the expertise ofanother friend and colleague, Dr. Gunnar Andersson, MD, PhD., aninternationally recognized expert in musculoskeletal disease and injurywho is also credited with designing the unique seats in Volvoautomobiles.

Dr. Andersson, Professor and Chairman, Department of OrthopedicSurgery at Rush University Medical Center, says that education isprimary for the AS community “because of the rigidity of their spines.”

He says that everyone should be wearing their seatbelts “includingpatients with AS.” Dr. Andersson agrees with Dr. Myers that dependingon an airbag for protection in an accident can be problematic: “Whilethey provide additional protection, they do create a problem when thespine is kyphotic because of the forces created. Thus the seat beltclearly is the preferred protection in this respect.”

And as for the headrest, Dr. Andersson says that is the one feature thatwill afford you the most protection if your head is thrown backwards,

Collective fear of a car accident

The bestcar safetydevice is arear-viewmirror witha cop in it.

~Dudley Moore

LIVING WITH SPONDYLITISLIVING WITH SPONDYLITIS

Driving Safely With AS

such as in the case of a rear-end collision. He suggests using headrestraints as opposed to stock headrests, however. “Head restraints areactually better than headrests and can be retrofitted if necessary.Basically, the idea is to prevent the cervical spine from extending,which it cannot do in patients withAS very easily; for those reasons, theheadrests may have to be flexed slightly forward to accommodate thetypical forward flexion of an AS patient.

DRIVING WHEN YOU HAVE AS

So keeping all these vehicle-safety caveats in mind, should the fear ofgetting into an accident keep those with AS – with its inherentphysical limitations – from slipping behind the wheel? Not at all. Sincepeople with AS still need to get to where they have to go, driving canbe a necessity – regardless of any physical limitations.

Granted, the unique problems faced by AS patients that could con-tribute to an increased risk in traffic include limited range-of-motionissues, such as stiffness in the neck or other parts of the spine and hipsthat can make it tough to maneuver a vehicle into a parking space orthrough an intersection where the driver needs to look around foroncoming traffic. There may also be peripheral joint involvement thatdoesn’t allow free movement within the confines of a car.

But studies have concluded that people with even advancedAS can stilldrive safely by making simple modifications to their vehicle or to theirdriving techniques. Some intrepid AS patients have used their owningenuity to come up with devices that help mobility-restricted driversoperate their motor vehicles.

NECESSITY IS THE MOTHER OF INVENTION

James Hall Jr. suffers from kyphosis of the spine – all vertebrae arefused except for C1 and C3. He says he has precious little movement inhis neck and spine, but driving is a breeze for him due to his owningenuity.

The 58-year-old San Diego support-group member who was diagnosedwith AS in 1975 says that he uses a “device” that he saw mentioned inan arthritis magazine. He describes it as a “lazy-Susan” type piece ofwood covered in foam padding and cloth that he parks himself uponwhen he drives.

“I use it for short-distance driving where it is perfectly tolerable,” hetells Spondylitis Plus. “It swivels my hips and allows me to sit morecomfortably and gives me a bit of ‘extra turn’ when I come to anintersection.”

James says he also wears a cervical brace with added foam – back-wards. He takes comfort in the fact that it provides him with a cushionat the base of his skull and top of his shoulders.

“I’m only looking for ways to be safer while hurtling through space ina steel box at 30 to 60 miles per hour,” he says with a chuckle.

MIRROR EXPANDS WORLDVIEW

And then there’s Brad Sawyer, a Viet Nam-era vet with long-term AS.His spine, neck and ribcage have fused, leaving him unable to turn hisneck and robbing him of nearly a foot in height. Out of dire necessity,he designed a 260-degree true-reflective mirror that allows him toclearly see all sides coming, completely eliminating the troublesomeblind spots. “What you see in the mirror is actually coming, too,” hesays, “it’s a true reflection; nothing is smaller or larger in the vision.”“It was out of absolute necessity for me or I wouldn’t be driving,” Brad,who lives Cape Cod, recalls. “I used to always have to have my passen-gers look around to see if other cars were coming; my wife worriedabout me driving alone. And one time I had a horrific near miss – and Ican tell you that the sound of screeching brakes can be terrifying.”

The “MultiFlex Adjust-A-View Safety Mirror” (U.S. Patent No.6926416)** actually provides for a tool-free simple attachment to thedriver’s side sun visor giving the driver a distortion-free imagereflection in both the left side’s and the right side’s blind spots, and youcan easily see the passengers in the backseat, too.

Sawyer says he has approached various carmakers with his invention,but admits that they are proving to be a tough nut to crack. “But if it’shelping someone drive who otherwise could not, that’s all I care about,”he says with pride.

SOME TIPS FROM EXPERTS:

The following suggestions have been culled from many drivingreferences sites and studies:

*Seatbelts:Always use your seatbelts with a shoulder harness: The seat-belt is the single most important lifesaver in a crash. Studies by theInsurance Institute for Highway Safety (IIHS), industry group, recom-mends seat belts that are easier on fragile shoulders and ribs. Researchby the Dept. of Transportation has shown that lap/shoulder belts, whenused properly, reduce the risk of fatal injury to front-seat passenger caroccupants by 45 percent and the risk of moderate to critical injury by50 percent.

www.spondylitis.org 13

Everything in life is somewhere else,and you get there in a car.

~E.B. White, One Man's Meat, 1943

LIVING WITH SPONDYLITISLIVING WITH SPONDYLITIS

14 spring 2007 SPONDYLITIS PLUS

*Brake lights: Extra high-mounted brake light to alert drivers behindyou: Rae Tyson, a spokesperson for the National Highway TrafficSafety Administration (NHTSA) points to a 1986 NHTSA law changethat mandated that all new passenger cars include a center highmounted stop lamp, or “CHMSL” – a third stop lamp, or brake light,mounted on the rear of a vehicle. “We saw a safety benefit– a declinein crashes,” he said. “Anything you can do to raise visibility of avehicle is good.”

*Special mirrors: Special mirrors that offer a wider view of what’sbehind you could be fitted onto your car. These mirrors reduce the needto turn the head to check for cars in the driver’s “blind spot.” Many ofthese types of mirrors are on the market; however it is important to taketime to practice parking using these new attachments.

*Safe car:Own a car that is known to absorb the impact of a crash. Seethe additional research at the end of this story and research vehicles tofit your particular needs.

*Headrests: The best seat and headrest are designed as one system;fixed head restraints reduce the risk of neck injuries by 25%; whereasadjustable head restraints only reduce the risk by 15%. Head restraintgeometry explained: The necessary first attribute of an effective headrestraint is good geometry. According to the IIHS, if a head restraintisn't behind and close to the back of an occupant’s head, it can't preventa “whiplash” injury in a rear-end collision. Headrests are also advisedto avoid sudden injuries to the neck as the stiff neck of an AS patient ismore easily injured than a normal neck.

*Cushions:A small cushion behind the back or under the buttocks canhelp maintain good posture when driving a car.

EACH SITUATION IS UNIQUE

The above suggestions are just the beginning. There is a wealth of richmaterial out there for drivers to consider for themselves; what worksfor one may not work for everyone. Each safety feature must be seri-ously considered for each individual circumstance.

And one more thing: Always do your best to avoid the jarring potholeswhen driving. Avoiding potholes is more than just a metaphor about life.

*See Bryan E. Bledsoe, DO, FACEP, “Ankylosing Spondylitis PatientsNeed Special Care,” Spondylitis Plus, July-August, 2006 issue and onwww.spondylitis.org/; the article originally appeared in the Journal ofEmergency Medical Services (JEMS); July 2006 • Volume 31• Number 7, plus the article appears on SAA’s website:www.spondylitis.org/

**The mirror sells for $19.99; to learn more about this safety mirror visitwww.multiflexmirror.com

REFERENCES

SAA would like to thank The Ankylosing Spondylitis InternationalFederation (ASIF) and The National Ankylosing SpondylitisSociety of Great Britain (NASS), along with the late NASSdirector, Fergus Rogers, for his kind help with this story. Wereferred to their publication “Car Driving with AnkylosingSpondylitis” for assistance with research. The booklet was writtenby Dr. Jon Erlendsson, a rheumatologist based in Denmark.

British Society for Rheumatology;1991, Driving and ArthritisJones, J.G. and Lassere, M.N.

British Society for Rheumatology;1986, A Review of 100 Patients with Ankylosing SpondylitisWordsworth, B.P and Mowat, A.G.

Journal of Emergency Medical Services (JEMS); July 2006Volume 31 • Number 7

The Insurance Institute for Highway Safety – IIHS

The National Highway Traffic Safety Administration

ADDING INFORMATION FOR IMPORTANTFURTHER READING AND RESEARCH

Resources for user-friendly vehicleswhere you can evaluate options for your particular needs:http://www.arthritis.org/resources/travel/Car_Guide/Features_love.asp

Insurance Institute for Highway Safety(for top safety picks in vehicles)See: http://www.iihs.org/ratings/And: http://www.iihs.org/research/bibliography/rear_crashes.html

The IIHS scores its frontal-crash results as Good, Acceptable,Marginal, or Poor. You can find ratings for all tested vehicles onthe IIHS Web site, at:www.hwysafety.org.

Dynamically Tested Seat/Head Restraintshttp://www.consumerreports.org/cro/cars/safety-recalls/consumer-reports-suvs-pickup-rear-collision-and-whiplash-protection-106/index.htm

10 Safety Checkshttp://autos.yahoo.com/consumerreports/article/safety_checks.html

LIVING WITH SPONDYLITISLIVING WITH SPONDYLITIS

www.spondylitis.org 15

Education & Support Meeting Facilitators

Chair:Dr. Robert Colbert, MD, PhD . . Cincinnati, OH

Bruce Clark, PT . . . . . . . . . . . . . . Vancouver, BC

Daniel Clegg, MD . . . . . . . . . . . . Salt Lake City, UT

JohnDavis, Jr., MD, MPH . . . . . San Francisco, CA

Atul Deodhar, MD . . . . . . . . . . . . Portland, OR

NortinHadler, MD. . . . . . . . . . . . Chapel Hill, NC

Robert Harris, MD. . . . . . . . . . . . Whittier, CA

Robert Inman, MD . . . . . . . . . . . Toronto, ON

MuhammadAsim

Khan, MD. . . . . . . . . . . . . . . . . . Cleveland, OH

WalterMaksymowych, MD . . . . Edmonton, AB

AllanMetzger, MD . . . . . . . . . . . Los Angeles, CA

DavidNeustadt, MD . . . . . . . . . . Louisville, KY

JohnReveille, MD. . . . . . . . . . . . Houston, TX

James Rosenbaum, MD. . . . . . . . Portland, OR

Millicent Stone,

MB, MRCP(UK) MSc . . . . . . . Bath, UK

Joel Taurog, MD. . . . . . . . . . . . . . Dallas, TX

RubenBurgos Vargas, MD . . . . . Mexico City, MX

RobertWarren, MD, PhD . . . . . . Houston, TX

Michael Weisman, MD . . . . . . . . Los Angeles, CA

DavidYu, MD . . . . . . . . . . . . . . . West LA, CA

Medical and ScientificAdvisory Board

Online Poll

You can find this new Instant Poll on ourwebsite at www.spondylitis.org.

new pollAre you receiving Social Security DisabilityInsurance (SSDI) benefits?

� Yes� No� Yes, however, my co-pay is too high for me to

afford the medication

� I currently am applying for SSDI.� I receive other disability benefits.

old poll resultsDoes your insurance cover TNF-blocker therapyfor your spondylitis?

Yes, my co-pay is within my family’s means.......56%Yes, however, my co-pay results in a hardshipfor my family ......................................................15%No, my current medical insurance doesnot cover TNF-blocker therapy ......................14%Yes, however, my co-pay is too high forme to afford the medication ..........................11%I receive assistance from a foundation,such as the Chronic Disease Fund toreceive TNF-blocker therapy ............................ 4%Yes, even though my form of spondylitisdoes not have an FDA indication (off-label) ........0%No, since my form of spondylitis does nothave an FDA indication (off-label) .................... 0%

The people listed below are a vital part of our support system. They havevolunteered to lead support groups across the US because they want tohelp. If you’d like to find out more about support groups and onlinemeetings, pick up the phone or send an e-mail to:

• Teen Athletes with AS located in Orange County - contact WalkerRSM@aol.com for more info.

• Little Rock, AR, Boise, ID and Portland, ME now have Spondylitis Educational Support Groups!

• Support online from NY, NY with Michael T. Smith, spenser23@aol.com.

Little Rock, AR

Phoenix, AZ

Long Beach, CA

Long Beach, CA

Orange County, CA

San Diego, CA

San Francisco, CA

Boise, ID

Boise, ID

FortWayne, IN

Indianapolis, IN

Kansas City, MO

Augusta, ME

Portland, ME

Detroit, MI

Holland, MI

Portland, OR

Philadelphia, PA

Myrtle Beach, SC

Dallas, TX

Houston, TX

Houston, TX

Washington, DC

Seattle, WA

Mindy Hunter

John Kornfeind

Barbara Crofut

Frances Tomich

Kyle Brownfield

Mike Supancich

Eric Passmore

Tim Schaap

Cindy Salo

Ken Prather

Ken Prather

Linea Cooley

Michelle Andrews

Penny McAuley

Laura Russell

Scott May

Ken Henschel

Howard Tevelson

Alex Best

Elizabeth Smith

Richard Powell

Stephen Haskew

RogerStead

Paul Stevenson

(501) 351-6374

(623) 910-4742

(562) 421-9698

(562) 429-9685

(949) 367-0430

(760) 438-2962

(510) 644-0864

(208) 453-5006

(208) 850-3313

(260) 637-1705

(260) 637-1705

(913) 384-0728

(207) 445-2885

(207) 878-9414

(586) 530-9988

(616) 610-9130

(503) 579-8375

(215) 844-6075

(843) 655-9762

(972) 860-7179

(409) 883-7822

(281) 337-3997

(703) 455-6005

(206) 524-2186

mindy.hunter@sbcglobal.net

jmmkorn@cox.net

crofutgr@verizon.net

not available

kylebrownfield@msn.com

supancichsr@sbcglobal.net

eric.passmore@gmail.com

tjschaap@msn.com

csalo11@hotmail.com

pratherken@yahoo.com

pratherken@yahoo.com

linea_cooley@hotmail.com

qualey28@adelphia.net

spondylitis.portlandmaine@yahoo.com

mrussell.21@netzero.com

smay@wmis.net

Ken.Henschel@comcast.net

hotbyht@yahoo.com

alexbest@sc.rr.com

elizabethsmith@dccd.edu

rwpowell@gt.rr.com

haskews@verizon.net

rogerstead@aol.com

pastev@Safeco.com

SAA’s Annual SpringOnline Auction

SAA’s annual Spring online auction is just a few months away. The 7-dayE-Bay event will spread awareness of AS and related diseases as wellas raise funds for furthering SAA’s mission to improve the lives ofspondylitis patient throughout the country.

Auction items will include hotel packages to exotic locales, jewelry,artwork, and autographed collectibles from famous musicians,entertainers, sports stars, cartoonists, authors and more!

All proceeds from the auction will go to continuing SAA’s importantwork in advancing spondylitis research, treatment and education.Remember – bid early and often!

LIVING WITH SPONDYLITISLIVING WITH SPONDYLITIS

NON-PROFITU.S. POSTAGE

PAIDWHITTIER, CAPERMIT NO.1

SpondylitisAssociationof America ™

Donate a Car today and helpadvance research tomorrow!

The process is quick and easy,includes free pick-up or towing,and best of all the proceeds goto a cause near and dear to yourheart—The Spondylitis Associationof America. The vehicle doesn'teven have to run for you to donateit. Consult with your tax advisorprior to donating a vehicle. CallHelene Hart at 800-777-8189 X 229for more information.

LOG INSAA members can now accessexclusive content in the memberarea. Login with your email addressand ZIP code at

www.spondylitis.org

P.O. Box 5872Sherman Oaks, CA 91403

research

Save

theDate!

Are you interested in receivingmore information about

ANKYLOSING SPONDYLITIS RESEARCH?

Do you or a relative haveAnkylosing Spondylitis?

If so, you can help a research effortto develop and validate a screening

tool for potential AS patients.

. . . . . .If you are interested, please contact:

Study CoordinatorASresearch@cshs.org

310-423-3032

SAA Educational SymposiaChicagoMarch 10, 2007

Los AngelesMay 5, 2007

Watch for our new website S.W.I.F.T.

(Spondylitis Web Info for Teens),

launching in early 2007! This website

has information specifically for teens,

ages 13-19, including stories from

teens living with spondylitis, tips for

school and sports and activities, and

information from the doc about living

with spondylitis as a teenager. Visit

S.W.I.F.T. at http://teen.spondylitis.org

The SAA wants to help people withspondyloarthritis (AS or a relateddisease) connect with others inlocations across the U.S. where asupport group has not yet beenestablished.

These people would liketo connect with othersin their area:

Robert Sauls, Modesto, CA

Kelly Riedesel, Weaverville, NC

Kerry Krow, Mountain View, MO

If would like to “reach out” to any ofthese people, please contact MelissaVelez, Programs Coordinator, atmelissa.velez@spondylitis.org

Reach Out andTouch Someone!