Colleen Kausak says she feels the coun-try is at a turning point, “it seems

like this year there’s finally increasedawareness about defibrillators and whythey’re so important. The things I’ve beentalking about for years, well now peopleare finally listening.”

One of thethingsColleen hasbeen talk-ing about isthe needfor AEDsin schools, on buses, and in other centralcommunity locations. When her sonAdam was diagnosed with Long QTSyndrome in 1997, she felt, “there was so

much we needed to doto protect him when hewasn’t at home.”

“Initially it was an uphillbattle,” she says. “There was-n’t any support. We had toeducate ourselves, and others at the same

time.” Her localrepresentativein Illinois puther in touchwith a lobbyist,and togetherthey worked on

an agenda to present to the legislature.Key points included EKGs for all athletes,an improved procedure for school physi-cals, LQTS materials provided to teachers

and school nurses—but first andforemost, AEDs in the schools.

The administration and staff in herdistrict were very helpful. Theyimmediately obtained two AEDs forthe large high school Adam attended.Currently the district has two moreon order. They are working on a stategrant, in partnership withMedtronics, to purchase AEDs for allremaining schools in the area.

Look for stories about other SADSvolunteers and AED Programs onour web site www.sads.org

Spring Issue 2002

Newsletter

In This IssueWhat’s Up at SADS ...............pg. 2

Volunteer/Affiliate News ........pg. 3

Blue Ribbon Award................pg. 4

Birthday Tribute.....................pg. 5

Research.................................pg. 6

In Loving Memory.................pg. 7

Annual Report 2001 ..............center

AED Funding News

February 6, 2002 - The US Senateapproved the “Access to Emergency

Defibrillation Act,” which provides statefunds to expand the availability of auto-mated heart defibrillators that treatpatients in cardiac arrest. The defibrillatorbill will authorize $30 million over thenext six years for community grants tohelp purchase and place automated exter-nal defibrillators (AEDs) in schools, com-munity centers and other public places.Funds can also be used to set up trainingprograms for the public and to developsystems to coordinate with emergencymedical personnel.

In October 2001 the Senate Health,Education, Labor and Pensions commit-tee approved legislation called the“Teaching Children to Save Lives Act.”This bill encourages schools to apply forfunding to train students in CPR. Schoolsthat already offer CPR courses are eligibleto apply for grants which extend theirtraining to include the use of AEDs.Children in grades 6 through 12 are eligi-ble for this funding.

Automatic External

Defibrillators (AED) in Schools

“…well now people arefinally listening.”

See page 6 for AED resources

About Rachel Day

Iam happy to join the SADSFoundation. This organization provides

invaluable services to families, patients and health care professionals, which, asDevelopment Director I am excited topromote. After working as a journalist for several years, I missed the sense of fulfillment present in the non-profit world.I wanted to work with people, for a causethat mattered. I found that sense of purpose at SADS.

I have alreadylearned so muchfrom the com-mitted staff andmany volunteersof this organiza-tion. This is anexciting time forthe foundation. We have lots of goals,many programs to develop, as well as talented new individuals to work with. I feel lucky to work for, and with you.

2

What’s Up at SADS?From the

Executive Director

The supportall of you giveour programsis very excit-ing! We atSADS reallywant to get toknow youbetter. Manyof you filled out the survey(www.sads/survey.org) included inour last newsletter—thank you verymuch. We will use this informationto update your record in our newdatabase. In this way, we hope tostrengthen programs, such asNetworking, and develop new pro-grams to meet your needs. We alsowant to create a means to keep intouch with you on a more regularbasis—and for you to keep in touchwith us and with others throughoutthe country and around the world.We want to use all the talents, expe-rience and knowledge available inour quest to save kid’s lives.

To make sharing and communica-tion easier, we plan on using e-mailmuch more extensively—to sendout short news bulletins, updatesfor people interested in a particulararea or project, etc. Please let usknow your e-mail address (and anyinterests you may have).SADS@sads.org

We also added some new features toour web site—including materialsabout LQT Syndrome, the SADSFoundation, etc. which you canprint and copy for your local com-munity. We get many commentsfrom people new to SADS abouthow useful our web site was tothem—but we would like to knowif it is useful to you, and what wecan add or change that will helpyou in your work.

SADS is pleased to welcome DeniseFalzon to our Board of Directors. Denisehas worked withSADS Foundationsince she contactedus in 1993 after losing her 19-year-old son, Brian. Hervolunteer efforts aretireless—in bothfund raising andawareness initiatives.Though she is a fulltime Realtor, Denisedescribes herself as“an activist.” She is amember of numerous professional, educa-tional, charitable and social organizations.

“Eight years ago, my life as I knew itcrumbled when my ‘healthy’ nineteen year

old son, Brian, suddenly collapsedand died. The cause of death wasinconclusive, but a sudden arrhyth-mia due to LQTS was suggestedbecause of a fainting episode thatwas misdiagnosed a year earlier. Ihave dedicated myself to SADS,because I truly believe my son,Brian, would be here with us nowif he had been diagnosed correctly.I do this in my son’s name so thathe may never be forgotten. I prayand hope that by educating thepublic and medical professionals

about the symptoms and warning signs ofLQTS, we will be able to stop the senselessdeaths of other young people.”

Christie Machan, a tirelessSADS staff member forthe past 2 years, has leftthe Foundation to pursueother career goals. TheBoard, staff and the manyvolunteers of the SADSFoundation would like togive Christie our heartfeltthanks! Her generosity ofspirit, patience, and dedi-cation to the people ofSADS inspired us all. Wewish her well in her newwork! Christie, Genevieve really misses your puppy, Mabel!

www.sads.org

Spring Issue 2002

SADS UK News

It has been a very busy time for SADSUK. We are happy to say there’s been a lotof recent media interest in SuddenArrhythmia Death Syndrome.

The British Broadcasting Company (BBC)compiled a documentary about The Gorryfamily. After a Long QT diagnosis in onefamily member, researchers theorized themysterious deaths of many young peoplethroughout the family could probably beattributed to this condition. The filmtraces the family’s history and documentstheir efforts to reach all living members to talk about the risks, symptoms andtreatment of LQTS.

After the show, people phoned our hotlinenon-stop for the rest of the evening andthrough the following week. We sentdozens ofinformationpackets out,and many peo-ple went on toseek specialistmedical advice.

Tragically oneof our SADSmembers,Susie, experienced a second family death.Her 21-year-old daughter was found inbed—another devastating victim of LongQT. The incident was reported in theNational Press and our SADS UK supportgroup was featured in the article. Susievowed to try and prevent needless deathslike that of her sister and beautiful daugh-ter Nadine. SADS members throughoutthe country are working extremely hard toraise awareness about these tragic deaths.

Each year our country recognizes thevital role of philanthropy in our com-

munities, and in our lives, with NationalPhilanthropy Day. On this day we honororganizations and individuals who con-tribute time, talent and money in an effortto improve the circumstance of others.

In observance of Philanthropy Day, theUtah Nonprofits Association and the UtahSociety of Fund Raisers present a specialaward, acknowledging the impact individ-uals have made to their respective causes.

We are pleased to announce that in 2001,our Board member, Katherine Timothy,received The Heart and Hands Award atan honorary luncheon in Salt Lake City.

Katherine is one of the originalfounders of the SADS Foundation. In1990 she was working with Dr. Vincentas the Long QT research coordinator,when a critical breakthrough was made.After expanding the principal geneticpedigree for LQTS research, Katherineworked closely with Dr. Mark Keatingto identify the linkage between theChristenson pedigree and the affectedgenetic location. Their work was published in Science in 1991.

The reputation and success of SADS is built largely on the credibility andvision of its founders. We work to realize their dream of saving lives.

Katherinehas givenher time,expertiseand loveto thisfounda-tion formore thanten years.Shereminds us of how far we have come, andin her continued partnership with Dr.Keating, how much work we still have todo. We join the state of Utah in honoringher accomplishments and generosity.

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The Heart and Hands Award

www.sads.org

SADS Australia

As director of SADS Australia, July Foleyhas made great progress in formalizingthe structure and purpose of theorganization. Long QT awarenessis spreading rapidly in Australia.With that awareness comes agrowing need for support and information, which Julie and her volunteers are working to meet.

With a new Board of Trustees and committed members, SADS Australia isdesigning LQTS poster to be distributedto doctors and clinics around the country.

Julie is also working on a nation LQTSsupport network. In an effort to connecther newly formed group with Long QTpatients around the world, she is sendinga stuffed kangaroo, “Kanga,” on a global

tour. She hopes individuals and fami-lies dealing with LQTS will inviteKanga into their homes and officesand then write letters of introduction,

detailing their experience of living wellwith this syndrome.

Contact Julie and her staff atwww.sads.org.au

Spring Issue 2002

www.sads.org4

Another Great No Ball At All!

We want to thank everyone who participated in our Seventh Annual No Ball at All.It was a great success because of the commitment, time and money, so many of

you contributed. This event is the cornerstone of our fundraising efforts, and the moneywe raise sustains the programs and staff of the SADS Foundation through much of theyear. Your generosity fuels our research, support, advocacy and awareness initiatives.

We extend special appreciation to our dinner committee. Their willingness to share personal experience with friends, neighbors and colleagues, made the importance of this syndrome, and our immediate need clear. So, with much gratitude we acknowledgeeach of you.

If you would like to participate in our No-Ball-At-All in 2002, please contact Rachel Day at (801) 531-0937 or write to Rachel@SADS.org

SADS Wish List

• Computers- we badly need 2 computers to replace old, inoperable machines.

• Frequent Flyer Miles- staff needs to travel to affiliate groups around the country

• Mailing Service- We do 4-6 bulk mailings each year through a professional mail-ing house. If anyone has connections for a possible donation of postage or mailingservices, we need your help! We can ship materials to your vendor for processing.

• Printing-we want to print all our materials for the year. We can use any printer inthe country.

Joel Augenblick

January 6th, 2002 was a red-letter day onthe Augenblick calendar. It was the 80thbirthday of David—my husband of 55years and the devoted father of our fourchildren. It was the perfect occasion togather the family and celebrate this mile-stone. Preparations had begun six monthsbefore, therefore all the children, grand-children, sundry relatives and many friendswere able to gather and toast his healthand vigor.

The onlysad notewas theabsence ofour sonJoel, whoalmostfour yearsago at theage of 46,just didnot wake up one morning. No symptoms,no warning, just sudden arrhythmia deathsyndrome. The unexpected loss of avibrant, healthy athlete—a sculler, a kayak-er, a Macabee gold medallist—was over-whelming. He had recently seen the birthof his first child. She would not rememberhim at all. At age four, she now says “shehas no daddy.”

Time has softened the edges of grief,though Joel lives on in our daily thoughts.What better way to honor his memorythan to turn to this happy occasion into an opportunity to ask our guests to forgothe usual gifts and instead, make a contri-bution to SADS. Its valuable research maysome day help other parents avoid a similar tragic loss.

One of the most rewarding aspects of ourwork at the SADS Foundation is the oppor-tunity to learn from the educational andfundraising initiatives, individuals and families undertake to spread awareness aboutLong QT Syndrome. We hope this story of theparty held in Florida by Helen and DavidAugenblick inspires you as much as it didour staff. Please think about what you coulddo in your own community.

Patti AndroskoJerald and Sherrie BosemanDavid and Julie BrownPeg and Tim BruenRichard and Penny ClineFrankie DeedsSuzanne Doleman Shirley GasterStacy and Richard HuntColleen KausakDenise Larivee

Jennifer McKennaConstance and Paul NigroDebbie PurvisPam ReichBeth RespessMaureen SchulmanElmer and Esther SkoegardBlair,Gun Maria & Rick SwansonMartha ZaborowskiMarsha LeGrand Lentz

Matching Grant

We have a success story to share about an employment perk many of you may notbe aware of. Last October we received $150 from a certain, anonymous, donor. Amonth later, a check arrived from an unnamed corporation, for three times morethan the original contribution. A letter attached to the contribution explained theorganization’s matching grants program. Many employers are willing to match,and even increase the charitable contributions of their employees. We were soimpressed by the ease and net reward of this single example! We hope each of youwill ask your employer if a matching grants program is available in your company.

Spring Issue 2002

5

Karla Aaland’ Story

In today’s busy lives we have to be open tothe unexpected, and rise to the challengesthat come our way. I can assure you thatmy overflowing calendar had no room forthe news of a LQTS diagnosis in June of2000. As a mother of two teenager daugh-ters, newly enrolled in an MBA programand an executive in a thriving manufactur-ing business, I was already too busy. Fromdawn to dusk I was on the go….

Having lost my mother in 1971 to LongQT Syndrome, I resolved to make surethat my children grew up with a mother,and took on the mission of spreading the

word about a silent killer—Long QT Syndrome.

In the Fall of 2000, I had aGuidant AICD implanted,which has lifted the fear thatmany LQT carriers live under.It has virtually given me a

new lease on life. My family’s story will befeatured in their 2001 Annual Report.This worldwide exposure will bring LQTSto the forefront and serves as a solid kick-off for future speaking opportunities.

Back in the real world of day-to-day lifemy schedule is still full and the appoint-ments are back to back—but my passionfor spreading the news about LQTS takestop priority. Through speaking engage-ments and other press opportunities Ihope to reach others who are unsuspect-ingly inflicted by the genetic disorder.

Jenna Aaland

The Blue Ribbon Award

Strong spirit, kind heart and possessing a clear visionof the future are three phrases I would use todescribe my oldest daughter, Jenna. Her strongspirit was not shaken when she was diagnosed with LQT syndrome in the fall of 2001, and it washer clear vision of the future that allowed her toparticipate in the decision to have the AICDimplant. Jenna has never let her diagnosis of LQTSor her implanted defibrillator slow her down. Atthe tender age of 16, she is a beautiful youngwoman who experiences a heightened awareness of

the world around her, the feelings of others and the strength of her determination. Shehas accepted the changes in her life with poise, creativity and maturity beyond her years.

One important aspect in the life of any teenager is their access to activities like sports.Although Jenna’s thoughts of playing high school sports have been revised, she plays anactive role in things, like managing the girls basketball team or participating in non con-tact sports like golf. Her openness with her limitations has endeared her to the team.

Holding steadfast to her dreams, she plans onattending medical school and is contemplatingpursuing a career in pediatric cardiology. Ratherthan be a victim of the disorder, Jenna has cho-sen to turn it into a chance for personal growthand has emerged a victor. She is a true source ofinspiration to every member of our family, herschool and community. It is with great prideand respect that I call her my daughter. She istruly amazing!

“I resolved to make sure that mychildren grew up with a mother”

The Blue Ribbon Award:

We love to hear about childrenwho are thriving— the kids wholive well and grow-up with LQTS.These stories give hope to otherparents and families. Tell us moreabout your kids, their lives, suc-cesses and accomplishments.

Volunteer Task Force

Recently, seven volunteers from around the country “met” in a conference call withAlice Lara. It is a wonderful milestone for SADS that some of us from throughoutthe country are coming together to plan for greater local involvement for individuals(National Contact Volunteer, etc.) and Local Affiliate Groups in partnership withSADS. While individuals have been working to support SADS in myriad ways for along time, we are hoping that this increased structure will encourage and providemore structure for this critical volunteerism. Working together on national initiativeswill greatly increase SADS impact in the community.

Jodi Hill, moderatorKarla AalundPatti AndroskoDavid Brown

Claire Doyle (via e-mail)Allison FinkelsteinDick Stafford

Spring Issue 2002

www.sads.org

Detecting LQTS Earlier—

Preventing More Deaths

6

Spring Issue 2002

AED Resources

Please keep SADS up to date—let us knowif you are interested in, or working on anyAED project. We will use this informationto keep volunteers informed and shareideas, successes, etc. sads@sads.org

National Center for Early

Defibrillation

www.early-defib.orgA fantastic site launched by the MedtronicFoundation and the University ofPittsburgh in November 2000. The Centerprovides information, resourcesand support for those wanting tostart early defibrillation programsin their communities.

HeartCenterOnline

www.heartcenteronline.com & gothe arrhythmia section. This site has manysimple explanations about arrhythmias,Long QT Syndrome, AEDs and more.There is also a section entitled “AnArrhythmia Resource Center” sponsoredby Guidant.

Others

http://www.cpr-ecc.org/Cpr_aed/cpr_aed_menu.htm#padprogramsAmerican Heart Association’s informationabout AEDs, public access programs,training and much more. Also includessample documents to use in an AED program.

http://www.citizencpr.org/Citizen’s CPR Foundation publishesCurrents, a magazine with important ideasand new development about CPR. Alsoholds a large national conference each year.

http://www.aedusa.comThis site was founded by one of SADS’volunteers, Blair Jones, to help preventfurther deaths Blair’s son, Graeme, diedwhen he was 12 years old.

www.padl.orgThis site is devoted to educating the public about AEDs and the need for earlydefibrillation. You can check out yourstate’s laws (as they relate to AEDs), find atrainer, or request a grant to purchase anAED.

Research Study

The University of Kentucky is conducting aresearch study of a new treatment for Long QTSyndrome. They want to speak to people alreadydiagnosed with Long QT Syndrome and thosewho may have LQTS. The study involves theadministration of potassium, wearing a Holterevent monitor, four times and medications. If youare interested in participating, or to obtain moreinformation, please contact Tonya Shepperd, RN,Nurse Clinician at (859) 323-4738.

In the December issue of the Journal ofMedical Screening there are two articlesabout the difficulties of making the diagno-sis of LQTS. The articles rely on clinicalinformation made available to the authorsby Dr. Michael Vincent and KatherineTimothy – two individuals at the heart ofthe SADS Foundation who are also co-authors of the papers. Here is a briefdescription of the papers:

This first paper concludes that generalpopulation screening for LQTS (I.e. allnewborns) will not work right now. Thisconclusion was based on frequency curvesfor the corrected QT interval and onknown results of DNA testing in researchlabs. Frequency curves show how often aQT interval of any specific length isfound in children with and withoutLQTS. For the first time this information

was based on children from families whohave had DNA testing. The authorsfound that only 30% of children withLQTS would be found with screening atbirth and that DNA analysis would notdo much better even if it could be madeavailable.

Long QT syndrome in children: the value of rate correctedQT interval and DNA analysis as screening tests in the gen-eral populationW C Allan, K Timothy, G M Vincent, G E Palomaki, L MNeveux, J E Haddow

J Med Screen 2001;8:173–177

In the second paper, evaluating childrenwho faint is considered. This approachseems to be more likely to help. Manyfewer normal children will be tested sincefainting only occurs in about 1 in 14 normal children, whereas 1 in 2 childrenwith LQTS have an episode of faintingfrom which they recover. In addition, this paper suggests QT interval testing inthe parents of children with borderlineprolonged QT intervals can be used toincrease the detection of LQTS. Overall,about a third of children with LQTScould be detected if the QT interval wasevaluated after fainting with very few false

positives.

Long QT syndrome in children: the value of therate corrected QT interval in children who presentwith faintingW C Allan, K Timothy, G M Vincent, G EPalomaki, L M Neveux, J E HaddowJ Med Screen 2001;8:178–182

Are you or your family members

participating in any research stud-

ies? If so, SADS would like to know

about them. Please e-mail us with

the information (sads@sads.org) or

call (1-800-STOP SADS) so that we

can let other LQTS patients partici-

pate in research.

When a child faints,test for LQTS

Samuel Robert

Mitchell

Sept 23,1996-Jan 5, 2000

Sammy was a late-life fulfillment of mydream of having three wonderful children.We were thrilled when we found out I waspregnant. The age range was perfect forthe older kids to enjoy their little brotherand they took an active role in his care.They absolutely delighted in each other.

On Sammy’s 3rd birthday he lost con-sciousness while swimming. We couldn’tfind a pulse and performed CPR. Hespontaneously recovered before the ambulance arrived. The doctors at the ERwere baffled and sent him to a children’shospital for evaluation. We had manyother tests and specialist consultations, butnothing was found. No one suggested acardiac work-up. I was uneasy without amedical explanation but found an outletfor my fear by trusting in God.

Three months later Sammy went into aquick convulsion and lost consciousness.We called 911 and did CPR until theyarrived, but little Sammy’s heart neverstarted again. Our precious son was dead.Anguished, we waited for the autopsyresults to find out why. The phone callcame; they found nothing wrong withhim.

Our other children were tested with a resting EKG and sonogram, which alsoshowed nothing. Months later our doctorinsisted that we all have stress tests. These

showed possible LQTS for both children.The kids were put on beta-blockers andremoved from their competitive sportsactivities with regret and uncertainty. Justlast month, my mother had a stress EKGfor an unrelated reason and it showedLQTS. This result identified the geneticcarrier for Long QT Syndrome.

We know that Sammy’s legacy is twofold.Other lives will be saved through his story,including possibly his own brother and sis-ter. Two TV stations have spread his storyto promote awareness and my cardiologisthas lectured local physicians. Secondly, mywalk with my Comforter and Lord hassurvived and been strengthened.

Submitted by Wendy Mitchell,Sammy’s mother

Adam John Kausak

July 26, 1986 – January 17, 2002

On January 17, 2002 after completing the first semester of sophomore year, ourloving fifteen-year-old son, Adam, anhonor student at Grayslake CommunityHigh School in Illinois, died of a heartcondition called LQT Syndrome. Around4:00 P.M., his mother, Colleen, went outwith our son Andy. When she returned anhour later, she found Adam lying on his

bedroom floor. She immediately called911, started CPR, and administered ourhome defibrillator paddles. Every effort tosave his life failed.

Over 500 loving family and friends attend-ed his wake and funeral. It was evidentAdam impacted many lives in the 15 years

that God gave him tous. He will always beremembered for hisopenness and accept-ance of everyone.

In August 1997 Adamexperienced his first

episode. Colleen, returning from a shorterrand, discovered him unconscious on hisbedroom floor. Fortunately, she was ableto bring him back. After numerous tests,an ECG revealed he had prolonged QTrhythm. He was placed on Beta Blockersand prevented from participating in sports.

When Adam was diagnosed with LQTS,little did we know, it would change ourlives forever. Our entire family was testedand my son, Andy, and I were both diag-nosed with Long QT syndrome. Colleenwent into action to get awareness aboutthis life threatening condition out. She stillsays: “Living with LQTS is like living withticking time bombs.”

After Adam’s untimely death, Andy had a pacemaker defibrillator implanted onFebruary 11, 2002. Our other nine-year-old son, Alex, who thus far is asympto-matic, will be going for additional testing.

Although we are grieving the loss of ourson to this deadly condition, it is our fam-ily’s mission to make people aware of thismanageable but potentially devastatingsyndrome. We are continuing to workwith schools to obtain defibrillators andlobbying public officials to change sportsphysicals and to establish mandatory ECGtesting on newborns.

Submitted by Donald J. KausakAdam’s father

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In Memoriam

www.sads.org

If you want to submit a tribute to alost loved one, send us a letter and aphotograph. We will include them inupcoming issues.

Spring Issue 2002

“Other lives will be savedthrough his story”

First ever!Annual International

SADS Conference

Unexpected Sudden Cardiac Death in the Young:

A Focus on Genetic Causes of Arrhythmia’s,

Syncope and Sudden Death

Where: The Royal College of PhysiciansLondon, England

When: October 12 & 13, 2002

Who should attend: Families, primarycare physicians, pediatricians, and otherhealth professionals. There will be separatesessions just for families.Watch for more information (or let us

know to put you on the mailing list)!

Send Photos

People respond to stories and pictures. When conducting aware-ness campaigns, our volunteers andstaff need materials from you. Wewant to know more about you, yourfamilies and activities, hobbies andwork. We want to keep a visualrecord of people living healthy,happy lives. We would like to seechildren growing-up. If you havepictures you want to share with us,and other members of the SADScommunity please email them toRachel@SADS.org. If you don’thave digital images, send photo-graphs. Please!

Help SADS

Keep in Touch!

Our last newsletter mailingincluded asking the post office tocorrect our addresses. We havelost over 880 people and do nothave their new addresses! So…if

you know anyone who would like toreceive our newsletter, please let us know.And, if you use e-mail, please let us knowyour e-mail address so that we can keep incloser touch without the costs of postageand mailing. sads@sads.org

8

Now on www.sads.org

National Contact Volunteers: If you need totalk with someone in your state, please give usa call or look at our website for information.

The Drugs to Avoid List: You can find the liston our website or at www.torsades.org

If you would like a copy of either of these listsmailed or faxed to you, contact us atsads@sads.org, by mail or at 1-800-STOPSAD.

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Spring Issue 2002