A n n u A l R e p o R t

Dear Friends,

It is my privilege as the President of the SADS Foundation’s Board of Directors to thank you for your support over the last 20 years. The work that the SADS Foundation has been able to accomplish is nothing less than phenomenal. With record-breaking growth, both financially and in awareness numbers, we are poised on the brink of greatness.

The past few years have shown increased aware-ness of Long QT and other SADS condi-tions. Television, radio, internet, social media are all paying atten-tion. The SADS Foundation has been recognized by State Farm and Major League Baseball, and has been recognized as a leader among Face Book Causes. By using innovative and unique oppor-tunities, more individuals are learning about the warning signs before it is too late – thus preventing sudden death in the young.

So now we’re asking you again for your help. Help us continue our growth – both financially and in awareness. Tell your friends, join the cause, register at the SADS Foundation, give a gift, set up a fund, ask your company to become a partner with the SADS Foundation.

With each dollar raised, we are meeting the needs of more and more families affected with these potentially lethal conditions and helping them to live and thrive despite its presence. Together, we are not only saving lives but empowering our SADS families to live large.

Thank you for all you have done to sustain the work of the SADS Foundation. Working together, we will continue to save young lives.

Warmest regards,

Michael J. Ackerman, MD, PhD.

Dear Friends,

Twenty years ago a critically important milestone in the area of inherited arrhythmias and sudden cardiac death in the young occurred, being the founding of the SADS Foundation. Since 1972 I had been seeing and effectively treating families with the inherited long QT syndrome and other causes of SCD in the young, and developing very large family pedigrees and excellent clinical diagnostic tools, I partnered with my University of Utah colleague Mark Keating MD, PhD in 1989 and his team began to do molecular genetic analyses on members of my large families. Within a few years his team found the first mutation causing Long QT syndrome and subsequently others. With the great deal of excitement that genetic finding generated in the medical and news communities I thought it was time to develop a foundation to assist the research programs, provide support to affected families, and to spread the word to physicians, scientists, and the lay community about the scientific advances in diagnosis and treatment. Thus, with wonderful colleagues and friends David Salisbury, partner in a major Salt Lake City Law Firm, and Katherine Timothy who had worked with me for a number of years doing the crucial genealogy and contacting work in our LQTS families, we founded the SADS Foundation. With the discovery of this initial mutation, easier diagnosis and early treatment were possible, and the young lives being saved increased. The SADS Foundation and subsequently a number of others now save the lives of those affected by Long QT and other channelopathies (Timothy Syndrome, CPVT, ARVC, Short QT, etc.)

What an amazing 20 years it has been. We have brought together world-leaders in the field of channelopathies who now serve on our Board of Directors and Scientific Advisors. We have 20 years of science, data, facts, care plans, and other helpful tools for families, physicians and researchers alike. We have established an excellent, committed staff, and a volunteer base that spans the globe. We have funded research, and are seeing change in the awareness of Long QT and other SADS conditions. The science and knowledge base are built, and the SADS Foundation is now ready to launch into the next 20 years – raising awareness globally, saving young lives before they are at risk of sudden death, and seeking cures for these conditions.

Please accept our warmest appreciation for your support over the years. You are wonderful! Your faith in our mission and your vision have paid off, and now we are ready to grow into the future. Please continue and increase your financial support of our important cause, knowing

that every dollar you spend is devoted to saving young lives.

Thank you, with my warmest personal regards,

G. Michael Vincent M.D.

2011

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SADS Annual Report 2011 SADS Annual Report 2011www.StopSADS.org www.StopSADS.org

2 3

Advocacy VolunteersLisa AdamsJennifer Allen-BalmaMary ArendsAnn M. AschoffDebbie BenjaminJoanna BewickLoren and Susan BrownKevin and Lisa BrueggeAna ChiaventoneDr. Sumeet S. ChughRochelle CohenMark EdwardsYasna EricksenDenise and Chris FalzonAndy GoldenThomas and Christine

GokeyGail and Thomas GoulartMs. Libbie HoughSandy KawamotoStewart KrugBarbara MadisonSandy McgrawNatalie ParkLori PeacheyPamela J PelleDr. James PerryCorinne RuizJan SmithTrisha StepkinAngela TaylorMartha TempleJackie ToddBarbara ToloskyCraig ToloskyMelissa ToloskyMarilyn WaddenLouise and Chris WalkerMs. Michele WenholdBryan and Elaine Wilson

Awareness VolunteersCarol AlgernonJennifer Allen-BalmaLinda AndersonKat AndrewsNikki AndrewsAmanda ApplegateAmber ArispeLounita ArmstrongPhilip AsherAlphonso BakerAlyssa BalsamelloMegan BaroskaGail BartokLisa BeckmanJaime BellomyKen BenjaminRhonda BernsteinJoanna BewickJodi BewickPatty BlakeleyStormie BlueMiranda BonneyMary Ellen BowlbyKaren BoydHolly Brandon

Jeanine BreenPaula BroullireLoren BrownKevin BrueggeJessica BuffingtonMary BurchBarbara ButcherGina ByrnesMarlon CabreraCynthia CantonIngrid CarlsonAllie CarrRenae CarrRichard CarrJudith Carter

Chris CasonMark ChallenderAmanda ChesserSumeet ChughNora CochranShelli CokleyDiane ConjertiVanessa ConnellPaige CooperJune CorleyAngela CourchesneLinda CowleyKila CoxRobert CrockettTracy CroninLisa Crua-NelsonVince CuellarMelanie CuisonTracy CurtisSandy CusackJennifer DalpeYvette Dancel-GonzalezTeresa DangerfieldRich DaragoCristina DarrMelani de la VegaKatherine DeBiaseToni DelaneyLinda DellingerLinette DerminerSue Dietrich

Allison DimsdaleEileen DirraneCelia DouthitGenevie EcholsKevin EcholsHolly EcksteinNikki EganLauren EicherSandra EverettMelissa FalnessShannyn FasbenderLes FeldmanStephanie FelgoiseStephanie FestianBethany Finch

Alicia FloorDebbie FornayDebbie FournierLorelle FredricksonAnna FroederSharon GainsburgSally GenolioDeborah GillenAndy GoldenCari GormanTammy GrantzCourtney GreeneLisa GrosholzAlejandra GuerchicoffDonna GuilloryJudy GuzmanMyia HackettPamela HainesJennifer HanksGeorge HardingSharron HarperCarol HarrisShauna HatchEmily HatfieldTrish HeadrickMarthann HeilJackie HendersonLacey HenrySusan HerronKrista HeusnerLucy Hewitt

Lynn HicksAshley HicksonSherry HinesJessica HinkleCarol HittMary HollingsheadLauree HoltanStephanie HooperSue HornBetsy HowardNicole HuckDanielle HuckinsLeighanne HudsonAngela HuffmanChristine HughesTim HunleyLinda IpriBharat JaishyBishar JenkinsDawn JersonChris JoffeJoan JohnsonJodi KatzDebra KaufmanSandy KawamotoPatricia KeetonAngela KellerLinda KhalilShannon KissRebecca KnowlesAmanda KochCheryl KomendaJulianna KopakowskiNadia KotskaPeter KoweyRobin KruseBarb KrzenskiDaniel LaceyNora LambertJulie Lankey-SmallwoodChristine LaPiccirellaDarren LarkinRobert LawlerChristine LeBlancCorinne LetoDarlene Lewis-WeaverBrandy LockeLauren LoganAnnie LucatuortoAnthony LucatuortoKathy LucatuortoKatherine LynchTami MaderaMissy MadiganBarbara MadisonKathleen MaguireElissa MandishDiana MarekNicole MatthisBarbara MattisonSteevan MaurielloMorgan McArthurTracy McArthurApril McCloudErin McGeeSandy McgrawTheresa McKinleyPatricia McLaughlinDebbie MeissnerKaren MessingLaura MeyersAndy Miller

Evelyn MillerKaitlyn MoehlmanMike MonellBrandi MoreyArthur MossDeborah MrizinskiSheila MuellerAngela MuhlbachMercedes MulveyJennifer Newlin-AlbersAndrea NicholsSheri NienburgCarolyn NitcholasKathleen O'ConnorAgnes OderEdna OderBrittany O'HareLaura O'NeillLisa OraziettiMaria OrtizAngie PalcerKarla PalmerLynn PalmerLeann PaulLavita PaytonPamela PelleBarbara PereyraDawn PerryKaren PetersMarsha PetersonIva PetrosinoEd PortleyJodi PugsleyDebbie PurvisStephanie QuatinetzAmanda RagoBetty RamosDiane RaynorAlicia ReinaDonald ReitzDorothy RennerJanet RiepeRebecca RobinsonKari RoehlCari RothenhoeferBarbara Roy

Corinne RuizTinease RutledgeDiane SabanosAngelica SalisasSandra SandsCharity SaundersJessica SchleedeSara SchoepkeMaureen SchulmanRachelle ScottDana Sheffield

Brandon SheldonMeaghan SherwoodPeggy SimmonsDavid SipesAnissa SmithJan SmithMarissa SmithKaren SmootsTroy SmrekarDianne SpittlerDick StaffordTrisha StepkinJohn StilesJennifer StillSusan StraussLori StueweBrian SutchJill Sutton

Claudia TamboneAngela TaylorBrooke TaylorLadonna TecumsehMartha TempleLaura TewesAlma ThomasFred ThompsonKandace ThompsonKelly ThompsonCrystal Tichnell

Barbara TigerBob TimmBarbara ToloskyCraig ToloskyMelissa ToloskyErin TorresGreg ToteroPatricia ToteroCynthia TrotterJane TummondsPatricia ValdovinosSarah VanMaterSarah VickJenna Viker StewartAllison VogelCynthia WallachCarol Walters

Catherine WarrenCheryl WeiglePenney WeinheimerLori WeissCaroline WenholdMichele WenholdSamantha WilderBrenda WilkinTracy WilkyDoris WillBob WilliamsCarol WilliamsonJennifer WinterMelissa YbarraKaren ZilinskiPatricia Zmeskal

32

Corporate and Foundation($1000+)Boston ScientificCardiac ScienceGene DxIndependent Order of Odd FellowsThe Medtronic FoundationPhilips Medical SystemsSt. Jude Medical FoundationState Farm Mutual Automobile

Insurance CompanyTransgenomic, Inc.Utah Medical Association

FoundationWells Fargo (Amber Hartman)

In Kind GiftsMichael Ackerman, MD, PhDStuart Berger, MDRobert Campbell, MDErin Demo, MS, CGCSusan Etheridge, MDPeter Fischbach, MDGoogleLeFavor EnvelopesLorraine PressPat Buller DesignSilvia Priori, MDDan Roden, MDPhilip Saul, MDSugar SyncG.Michael VincentXMission

Matching Gift FundsAdobe Systems IncorporatedBank of the WestCNA SuretyCRW GraphicsFirst Data FoundationITW - Illinois Tool Works

FoundationOracle CorporationWestern Union Foundation

David Salisbury Legacy Circle$1000+Michael Ackerman MD, PhDJeremy AncellChris Anderson MDJeannie BalsamJoanna Bewick

Ellen BolesRobert Campbell MDChuck and Renae CarrMrs. Sally ClevelandLinda CowleySharon CramerScott DailardMartin EliasSusan P. Etheridge MD and Mr.

Michael PondJeremy Fotheringham MDKevin and Elaine GlasheenTodd M. GorderHeidi HarperJackie Kaas Vines and Ron VinesSharon and Jim LentinoPaul Levine MDViolette LevyAlan London MDJeremy LopynskiAnthony and Cathleen LucatuortoMarlena and Joseph MayerAgnes and Conrad MihalekJill MillerBrooke A. MorrowRhonda Rand MDMary Ellen and Bob RowanMaureen and William SchulmanYan-Ting ShiuMr. and Mrs. Frederick SmithPatricia and Vince TaloneG. Michael Vincent, MDDan and Debbie WhiteClifford L. and Wanda S. WhiteFrank Rogers WitteAmy and Darren Kozelsky

Eileen and James Wilkoff Philanthropic Fund

$500-$999Kelly AireyAmy and Jeff BarryStuart Berger MD and Julie BillerKathryn and Scott BlumCarlos and Lois Ann Bowman

Chris and Carey BurchMary Ann CiciarelliDenise and Chris FalzonCynthia FisherJ. Patrick and Anne M. GallagherDr. Michael and Susan GarciaMrs. Shirley Mann GasterMary GlasheenFerdinand and Janet GrubeGrant HaaseAlan and Cora Harvey

Paul Israel MDTraci and Derrick JensenDotti Johnson and William RuskLisa Sydney KlarinAmanda and Mark Koch

John and Nora LambertTimothy LetterDan LevyPeter McMillan

Sheri and John MinerMs. Lisa Olson MBA, Ph.D.Karen Onsgard and Harriet SpragueMrs. Pam Osterhout-BattenDouglas and Angela ParkerMarilyn and Reg ParsonsKenneth and Rosalind PearlmanMs. Martha PostRichard RadzisJohn RauschIsmael RuizLarry and Margie SmithMs. Glenda StaffordJeffrey and Melinda Stephan

Thomas SutchPatricia WilsonMary YeastCathy and Brian Zbanek

Living and Thriving FundsKayla and Clay BeckmanEmily BoonePhillip BreenChuck Carr FamilyLee CiciarelliKathy EnghAlyssa and Britnee HatchDonna Marie KellyAudrey KochSally LaytonAnnie LucatuortoDanny MaurielloMr. & Mrs. Bernard McArdleBrandon MessingCache MillerPaul and Emerita RehZach TurnerSam and Kristen Yeager

Memorial FundsBrett AndersonBrianna BadgerJulie BernardLee Vernon BlackwellChallis BlumEd Blum

Mary Elizabeth ButtKelly Ann ChamberlainJonathon R. CowleyCynthia Boles DailardShawn DeVriesColleen DutkoBrian FalzonShirley Mann Gaster's ChildrenRob Kaas Frank KeitchLucille LevineBilly LevyMichael LondonRyan LopynskiClara Maida

Tommy MarrenSabrina Martin

Barbara Elizabeth MastersStephanie MejiasRosanna MetoyerJustin Mark O’MearaVictor NigroRonnie PalcerKim Thi Le PhanWilliam C. PollockBrian PriceWindland Smith RiceRebecca Righeimer

Continued on page 4

Dax Buller of Salt Lake City, Utah with his school project on SADS conditions.

The Blue Bird Café in Nashville, TN hosted a SADS Foundation benefit concert on August 18, 2011 featuring the talented Carl Jackson. The concert was dedicated to Rob Kaas who passed away in 2005 due to an undiagnosed SADS condition.”

Barbara Elizabeth Masters: 10/23/72- 7/22/12

Mayda Ruiz: died suddenly at age 36 of an undiagnosed SADS condition.

Michael J. Ackerman, MD and car-diac arrest survivor, Misty Morrison.

Laura Wall, Carol Willingham and Cathy Simon at a SADS Foundation benefit concert in Salado, Texas on February 12, 2012. The concert was dedicated to Cathy’s son, Brett Ivan Anderson, who passed away in 2009 due to an undiagnosed SADS condition.

SADS_2012 Annual Report_FINAL.indd 2-3 5/3/12 3:58 PM

Volunteer Events1st Annual Texas Hold 'Em

Tournament and Benefit Dinner - CA (Karie Salazar)

Abbey Wambach Memorial Events - NC, SC (The Wambach Families)

Barmitzvah Celebration - TN (Brandon Messing)

Brayden's Buddy Golf Tournament - AZ (Claudia and Bryan Tambone)

Brian Anderson Memorial Run - NJ (Diane Anderson)

Brittany’s Trees - IL (Jim Guthrie

and the Valene Family)Buono Vino Wine Tasting - NJ

(Laura Verniero)Cache Miller's Birthday Celebration

- UT (Melissa and Eric Miller)Carl Jackson Benefit Concert at the

Bluebird Café - GA (Jackie Kaas-Vines)

Celebrate Wayne and Conquer

SADS - GA (Shannon Kiss)Christie’s Heartoberfest - NY (Craig

& Barbara Tolosky)Climb to Conquer SADS - Mt.

Rainier, WADress Down Day - Bueche's Food

World - MI (Employees)Girl's (& Guys) Night Out - CA

(Jeannie Balsam in memory of Rebecca Righeimer)

Hawthorne Elementary Dress Down Day - NY (the McArdle’s)

Joseph Smith Memorial Building Volunteer Luncheon - UT (Renee and Jack McLelland)

Keith Young Memorial 5K Run - WY (The Young Family)

Kelsey's Kare Day - FL (Kelsey Rancourt)

Layton Oktoberfest - CO (Bill & Sally Layton)

Madison Chesser Fundraiser (FL) Marathon Participation for Lee

Ciciarelli - CA (Omar Garriott)Medtronic Global Heroes MarathonQuilt Raffle - GA (Linda Dillinger)Quilt Raffle in memory of Abbey

Wambach - NC (Dianne Henderson)

Run for Ryan - VA (Erin Lopynski)Ryan Weidler Golf Tournament - PA

(Carol Weidler)Saratoga Springs Day at the Races

- NY (Tolosky Family)Scarves for SADS - MI (Alice Smith)Schulman 50th Anniversary Party

- NY (Maureen and William Schulman)

Shelton School Jump-a-thon - TX (Kathy Martin & Betty Glasheen)

Thalheimer Family Fun Day - GA (Ellen Thalheimer)

Tommy Marren Beef and Beer - PA (Jennifer Marren)

“Tri” for Abbey Triathlon - NC (Joe Wambach)

Walk for SADS Awareness - NM (Ricky Trietley and family)

Weekend Scrapbooking Retreat - NH (Cyndie and Todd Baker)

Where’s Bob? - USA (Bob DeVries)

Thanks to our Medical Education Speakers in 2011Michael Ackerman, MD, PhDStuart Berger, MDRobert Campbell, MDDawood Darbar, MDErin Demo, MS, CGCSusan Etheridge, MDFrank Fish, MDPeter Fischbach, MDJackie Henderson, RNPrince Kannankeril, MDSilvia Priori, MDDan Roden, MDPhilip Saul, MDKaren Smoots, RNG.Michael Vincent

Thanks to our Medical Education Hosts in 2011Brooke Army Medical Center, San

Antonio, TXChildren’s Healthcare of Atlanta, GAChristus Santa Rosa, San Antonio,

TXCommunity College of PA

(Philadelphia District School Nurses), Philadelphia, PA

Dell Children’s Hospital, Austin, TXIntermountain Healthcare, UTMontefiore Medical Center, NY, NYNew York Presbyterian Hospital,

NY, NYUniversity of TX Health Science

Center, San Antonio, TXVanderbilt University, Nashville, TN

SADS Annual Report 2011 4www.StopSADS.org

Memorial Funds Continued from page 2

Financial Statement 2011

Therese RigheimerMayda RuizRace SalazarWayne SawyerKerry Ann SchulmanRyan SherwoodCasey ShockleyCourtney Renee

Sizelove

Stephen SmithJesse SmithAndrew StaffordShevaun StappChristie ToloskyBrittany ValeneJustin VikerAbigail Wambach

Ryan WeidlerKeith Young

* For complete listing visit www.StopSADS.org

Expenses

Education ...........................$200,488

Support ..............................$259,543

Volunteer ............................. $13,926

Advocacy ............................. $28,150

Awareness ...........................$155,936

Total Program Expenses ........$658,043

Management and General ....... $23,997

Fundraising .........................$163,859

Total Expenses in 2011 ..... $845,899

Revenue and Support

$0

$100

$200

$300

$400

$500

$600

$700

$800

Earned Income

In-Kind Donations

Individual Contributions

Foundation and Corporate Donations

20102011

TOTAL$781,120

TOTAL$569,944

$117,438

$438,033

$214,544

$11,105

$1,262$4,349

$398,936

$165,397

Heidi Owen and her two sons are living and thriving with LQTS in Stewartville, MN where Heidi ran the Medtronic Global Heroes Marathon in October of 2011.

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