“Every day you may make progress. Every step may be fruitful. Yet there will stretch out before you an ever-lengthening, ever-ascending, ever-improving path. You know you will never get to the end of the journey. But this, so far from discouraging, only adds to the joy and glory of the climb.”

— Sir Winston Churchill

A Year of Progress

2 0 0 8 A n n u a l R e p o r t o f t h e A m p u t e e C o a l i t i o n o f A m e r i c a

In Support of Our Mission

AdvocacyACAadvocatesfortherightsofpeoplewithlimblossoralimbdifference.Thisincludesaccessto,anddeliveryof,information,qualitycare,appropriatedevices,reimbursementandtheservicesrequiredtoleadempoweredlives.

ACApromotesfullimplementationoftheAmericanswithDisabilitiesActandotherlegislationthatguaranteesfullparticipationinsocietyforallpeople,regardlessofdisability.

ACAsensitizesprofessionals,thegeneralpublicandpolicymakerstotheissues,needsandconcernsofamputees.

SupportACA’sNationalPeerNetworkcertifiespeoplewithlimblosstoprovidesupportandinformationforotherswhoarejustbeginningtheroadtorecovery.

ACA’stoll-freecallcenterprovidesanswersandresourcesforpeoplewhohavelimblossoralimbdifferenceandthoseinvolvedwiththeirlives.

EducationACApublishesinMotion,First Step andothermagazinesthatcomprehensivelyaddressareasofinterestandconcerntoamputeesandthosewhocareforandaboutthem.

ACAdevelopsanddistributeseducationalresources,booklets,videotapesandfactsheetstoenhancetheknowledgeandcopingskillsofpeopleaffectedbyamputationorcongenitallimbdifferences.

ACA’sNationalLimbLossInformationCenter(NLLIC)isacomprehensivesourceofinformationaboutamputationandrehabilitation.

ACAprovidestechnicalhelp,resourcesandtrainingforlocalamputeeeducationalandsupportorganizations.

ACAconductsprogramsforitsmembers,professionalsandthegeneralpublictoeducatethemaboutthephysical,emotional,technologicalandotherissuesofamputees.

To reach out to people with limb loss and to empower them through education, support and advocacy.

©2009byAmputeeCoalitionofAmerica;allrightsreserved.ThispublicationmaynotbereproducedinwholeorinpartwithoutwrittenpermissionoftheACA.NofundingfromtheCentersforDiseaseControlandPrevention(CDC)isusedtosupportACAadvocacyefforts.TheviewsrepresentedinthispublicationdonotnecessarilyrepresenttheviewsoftheCDC.

CreditsWritten/CompiledbyAmputeeCoalitionofAmericaStaffEditedbyACACommunications&PublicRelationsDepartmentDesignedbyPatrickAlley

o u r m i s s i o n

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When you are inspired by some great purpose, some extraordinary project, all your thoughts break their bonds:

Your mind transcends limitations, your consciousness expands in every direction, and you find yourself in a new, great, and wonderful world. Dormant forces, faculties and talents become alive, and you discover

yourself to be a greater person by far than you ever dreamed yourself to be.”

– Patanjali

Extraordinary people impacting and enhancing others’ lives – that is the focus of our 2008 Annual Report.

One of the greatest difficulties we encountered after selecting our “Changing Lives” theme was choosing which wonderful stories to share in the limited number of pages we have available. Although we couldn’t include every story, please accept our salute to those individuals we included in this report as an acknowledgment of everyone who has committed himself or herself to the Amputee Coalition of America’s mission.

Every day, our volunteers and staff support and enhance the lives of people living with limb loss and their families. In this report, you will read about the Amputee Coalition’s peer visitor program, which touches more than 3,000 people annually. You will also read about efforts to educate young children and teens about limb loss in local schools and at our Amputee Coalition Youth Camp. And you will also meet some of our extraordinary volunteers who are participating in these and other important activities. Perhaps they will even inspire you to become a volunteer and change lives yourself.

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M e s s a g e F r o M t h e P r e s i d e n t & C e o a n d t h e C h a i r M a n o F t h e B o a r d

OureffortstosatisfytheAmputeeCoalition’smissionrestonthreekeyelementsofourvolunteerprograms:engagement,empowermentandtransformation.Thegiftoftimegivenbyourvolunteershelpspeoplerecover,readjustandreachtheirfullpotential.Wedeeplyrespectthechallengesamputeesface,andweunderstandthatbysharingknowledgeandexpertise,wecanachievemaximumpositiveimpactandlastingresults.Wehelpamputeesunderstandthattheyaretheirownsolution,andweworktominimizethebarriersthatstandinthewayofthechangetheyseek.

Together,weworktounleashthepowerthatlieswithineachpersonandeverycommunity,facilitatingaprocessofpowerfultransformation,notonlyforthepeopleandcommunitiesweservebutforthosewhoworkfortheAmputeeCoalitionaswell.

TheAmputeeCoalitionisanationalassetofthelimb-losscommunity.Wedependonthegoodwillandongoingsupportofextraordinarypeoplelikeourvolunteers,members,donors,partners,staffandboardofdirectors.Wecouldnotservepeopleaffectedbylimblossandfulfillourmissionwithoutyourhelp.

Wethankyouforyoursupportandpromisetokeepyourtrust.

Bestregards,

KendraCalhoun,ACAPresident&CEO

DavidMcGill,ACABoardChair

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OurMission.......................................................................................................................................... 2MessageFromthePresident&CEOandtheChairmanoftheBoard.................................................. 4

Changing Lives Through Information and Education............................................... 7SharingtheSimpleGiftofKnowledge................................................................................................... 8ACAOffersLimbLossCurriculumFreeViatheWeb........................................................................... 9ACA’sNationalLimbLossInformationCenterStrivestoReachOuttoMoreAmputees...................10ACA’sNationalConferenceBoastsRecordAttendance.......................................................................12SmallThingsMakeaBigDifference....................................................................................................14AmputeeCoalitionYouthCampHostsRecordNumberofCampers.................................................17ACATrains2008VolunteerOutreachTeamtoSpreadtheWord.......................................................19

Changing Lives Through Support......................................................................................20TheMostDifficultKindofLesson......................................................................................................21PayingItForward................................................................................................................................23ThePowerofPeerSupport..................................................................................................................26AmputeeCoalitionofAmerica’sNationalPeerNetworkReceivesThreeGrantAwards......................27

Changing Lives Through Advocacy...................................................................................29CancerSurvivorTeamsWithACAtoFightforFairProstheticCoverage.............................................30FullSpeedAheadintheFightforParity..............................................................................................32AmputeeActivistJoinsCountryLegendinPushingforProstheticParity............................................35

Changing Lives: The Numbers Behind the Faces........................................................36MissionImpact–AStatisticalOverview.............................................................................................37FinancialSummary.............................................................................................................................38FinancialReport..................................................................................................................................39SpecialFriendsoftheAmputeeCoalitionofAmerica–2008.............................................................43AmputeeCoalitionofAmericaCorporateSponsors–2008...............................................................48AmputeeCoalitionofAmericaLeadership.........................................................................................49AmputeeCoalitionofAmericaRegionalRepresentatives....................................................................50

Changing Lives Through Passion.......................................................................................51EnduringLegacy:PaddyRossbach,ACAPresident&CEO,2002-2008...........................................52AnnualGivingDonorForm................................................................................................................55

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ta B L e o F C o n t e n t s

“Education is the most powerful weapon which you can use to change the world.”– Nelson Mandela

C h a n g i n g L i v e s Through Information and Education

Sharing the Simple Gift of Knowledge Onedayin2007,WayneBucknerofBybee,Tennessee,wasdiggingaditchwiththehelpofatrencherwhensomethingwentterriblywrong.Inamatterofseconds,hehadfallenintotheditch,andthemachinehadseveredhisleftlegabovethekneeandpartofhisleftringfinger.Bucknerwasairliftedtothenearesthospital,wherehebeganthelongjourneytorecovery.

WhenthekindergartenclassatCenterviewSchoolinBybeeheardabouttheaccidentthatalmostcostBucknerhislife,thekidsmadehimget-wellcardsanddrewhimpicturestocheerhimupwhilehewasinthehospital.Bucknerspent35daysinthehospitalrecoveringfromhisaccident,andhewasgratefulforthechildren’ssupport.Heknewhewantedtorepaytheirkindness,andthoughttheperfectwaytosay“thanks”wouldbetopayavisitinsteadofsimplysendingtheclassathank-youcard.

WhenBucknerwasrecoveredenoughfromhistraumatoleavethehospital,hecalledtheAmputeeCoalitionofAmerica’slibrarytoaskforrecommendationsforchildren’sbooksaboutamputeesandpeoplewithdisabilities.Hisplanwastoreadthebookstothekids

“I immediately got many stares, and the kids didn’t know what to say,” recalls

Buckner. “Then the kids surrounded me. They wanted to touch my leg and

wanted to see if I had a foot.”

“I know that there are many around the area who do not know where to turn for help. I hope that when they see me, it will show them that there is still life after limb loss.” – Wayne Buckner

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anddonatethemtotheirschoollibrary.OntheseconddaythatBucknercouldwalkwithhisnewcomputerizedprostheticleg,hevisitedtheschoolandtookalongthefollowingbooks: My Brand New Leg,The Making of My Special Hand: Madison’s Story,andDifferent Is Not Bad, Different Is the World: A Book About Disabilities.

“Iimmediatelygotmanystares,andthekidsdidn’tknowwhattosay,”recallsBuckner.“Thenthekidssurroundedme.TheywantedtotouchmylegandwantedtoseeifIhadafoot.”

Bucknerlivesinaruralcommunity,somanyofthechildrenliveonfarmsorhavebeenaroundafarmmostoftheirlife.Animportantpartofhisvisitincludedadiscussionaboutfarmsafetyandhowtostayawayfromfarmequipmentwhenitisbeingused.

“Theyweremuchmoreinterestedinmyprostheticleg,”musesBuckner.

Afterthatpositiveexperience,Bucknerdecidedthathewoulddonateabookeachyeartotheschoollibrary.InMay2009,hedonatedMolly the Pony: A True Story.Onceagain,hecontactedtheACAlibraryforsuggestionsaboutwhichbookheshoulddonate.

Buckner’scontributionsoftimeandbookshavehelpedraisepublicawarenessaboutlimbloss.“Iwanttoraiseawarenesstohelpotheramputeesinmyhomearea,”hesays.“Iknowthattherearemanyaroundtheareawhodonotknowwheretoturnforhelp.Ihopethatwhentheyseeme,itwillshowthemthatthereisstilllifeafterlimbloss.”

Limb Loss Education& Awareness Program

LEAPLLEAPLACA Offers Limb Loss Curriculum

Free Via the Web TheAmputeeCoalitionofAmericaoffersitsLimbLossEducation&AwarenessProgram(LLEAP)curriculumforfreedownloadatamputee-coalition.org/publications_lleap.html.

LLEAPaddressesthesocialstigmaofchildrenwithdisabilities,particularlythosewithalimbdifference.Thecurriculumisbasedonthepremisethatchildrencanbetaughttorecognizeandappreciatedifferencesinthemselvesandothers.

Throughasequenceofmultisensoryactivities,childrenwill:•Realizethatindividualsaremorealikethandifferent•Identifytheirownstrengthsandattributes•Developanappreciationforthestrengthsandaccomplishments ofotherpeople•Exploreinterdependenceandthenatureofthehelpingrelationship•Becomeawareofhowlimblossorlimbdifferencemightaffect dailyactivities•Appreciatethestrengthsandaccomplishmentsofindividuals withlimblossorlimbdifferences•Understandthetypes,functions,andlimitationsofprostheses.

Withmorethan20classroomactivities,thecurriculumcanbe adaptedforusewithchildrenfrompreschoolthroughsixthgrade.

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ACA’s National Limb Loss Information Center Strives to Reach Out to More AmputeesPeople with limb loss face unique challenges in securing the information, support and services they need to participate fully within their home, school, workplace and community. With funding from the Centers for Disease Control and Prevention (CDC), the ACA maintains the nation’s most comprehensive source of information for people living with limb loss or limb difference – the National Limb Loss Information Center (NLLIC). The NLLIC collects, develops and disseminates information that is timely, comprehensive and available in a variety of formats. The NLLIC has developed programs and strategies that have proven effective and efficient and that have served as a model to other organizations.

AmongthemostsuccessfuloftheNLLIC’sprogramsandpublicationsare:•Atoll-freecallcenterthatrespondstorequests forresearchandinformationwithcustomized informationpackets•Award-winningprintpublications•Targetedoutreachactivities•Peersupport•Collaborationwithindividualsandorganizations thatdisseminatetheseresourcestotheircolleagues andconstituents.

“Our programs and services are making a difference in the lives of amputees around the country, but we must strive to reach even more of the nearly 2 million people with limb loss in the United States.” – Kendra Calhoun

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NLLIC 2008 AchievementsinMotion,amultiple-award-winningmagazine,hasacurrentreadershipofmorethan160,000eachissue.Normallypublishedsixtimesperyear,aspecialissueonagingwithlimbloss,printedwithalargerfont,wasaddedin2008.Otherelectronicandprintpublicationsaretargetedtospecificaudiences,suchasolderadults,multiculturalgroups,childrenandat-riskindividuals.

TheNLLIC’sNationalPeerNetworkincludesnearly300registeredsupportgroupsandmorethan900civilianandmilitarycertifiedpeervisitors.TheACAannualconference,whichbeganin1994withfewerthan100attendees,drewmorethan850attendeesin2008,itslargestattendanceever.

TheACA/NLLICWebsitehadmorethan400,000uniquevisitorsin2008,a13percentincreaseover2007.AsmoreandmorepeoplemadethisWebsitetheirsourceforinformationaboutlimbloss,aredesignwasscheduledtoaccommodatethegrowingtraffic.Theredesignwaslaunchedin2008andwillcontinueinto2010.Additional

achievementsandactivitiesoftheNLLICin2008include:•Specificinquiriesgrewfrom6,906in2007to 8,255in2008–a15percentincrease.•Thetwomostpopularinformationpackets disseminatedtoNLLICusersin2008werethe publicationFirst Step – A Guide for Adapting to Limb Lossandthegeneralinformationpacket fornewamputees.

MethodsthattheNLLICusestodisseminatelimb-lossinformationincludethepublicationof

factsheets,therevisionofarticlesintoanEasyReadformat(aneighth-gradereadinglevelorlower),andthetranslationofarticlesintoSpanish.•FactsheetsaccessedthroughtheWebin2008 numbered49,041–a14percentincreaseover 41,885in2007.•EasyReadarticlesaccessedthroughtheWebin 2008totaled43,548–a12percentincrease over38,066suchWebhitsin2007.•ThetotalnumberofSpanishtranslationpages disseminatedin2008was106,937.•Toencourageourprofessionalmembersto takeadvantageoftheinterlibraryloanprogram andmakemoreefficientuseofthelibrary’s collection,in2008,theNLLICbegan highlightingthejournalsthatitsubscribesto inmonthlyPubMedabstracts.•Morethan70limb-loss-relatedbooksand videoswereaddedtothelibrary,withspecial focusonchildren’sbooks,healthfullivingand gaittraining.

ACA’s National Conference Boasts Record Attendance

TheACA’s2008NationalConferencehadanotherhighlysuccessfulyearin2008,withnearlya10percentincreaseinattendancefrom2007.Arecord874attendees–297ofthemfirst-timers–convenedforafull,fun,informative4days,withfamilyandfriendsgalore.

Newfor2008wasaparent/childtrack,givingfamiliesofchildrenwithlimblossordifferenceachancetolearn,network,shareandplay.Allparentsratedtheprogramveryhighlyandwantedtoseeallofthesessionsrepeatedandevenexpanded.

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NLLIC 2007-2011 Priorities•Disseminatingandevaluatinglimb-losseducationalmaterials•Conductingnationaloutreachthroughthedevelopmentand disseminationofmaterials,support,programsandservices•Disseminatingandevaluatingmaterialsandprogramstargeting socialandemotionalneeds•Developinganddisseminatingpreventionmessagesthrough collaborationwithotherorganizations•Developingandmaintainingorganizationalpartnershipsto supporttheseinitiatives•Monitoringandevaluatingprograms,servicesandactivities

“Ourprogramsandservicesaremakingadifferenceinthelivesofamputeesaroundthecountry,butwemuststrivetoreachevenmoreofthenearly2millionpeoplewithlimblossintheUnitedStates,”saysKendraCalhoun,whobecametheACA’spresident&CEOinSeptember2008.“Unfortunately,astheincidenceofdiabetesandperipheralvasculardiseasecontinuestoescalate,thenumberofamputeeswillalsorise.”Itisestimatedthatperhaps3.6millionpeoplewillbelivingwithlimblossby2050–almostdoublethecurrentnumber.

“WearefortunatetohavefundingfromtheCDCtosupportsomeourbasicservices,butnotall,”saysCalhoun.“ThesearenoteasytimesfororganizationsliketheACA.Likeeveryoneelse,wearebattlingrisingcostsandastrugglingeconomy.That’swhywedependheavilyonthekindnessofthosewhocareabouttheACAandwhounderstandtheimportanceofhavinganationalorganizationtomeettheneedsoftheamputeecommunity.”

Otherfirstsattheconferenceincludedasuccessfulupper-extremitytrackandtheFirstSwimTMandFirstVolleyTMsessionshostedbytheOrthoticandProstheticAssistanceFund(OPAF).

Onceagaintheconferencereceivedexceedinglyhighmarks,withmorethan95percentofevaluationrespondentsreportingthattheyweresatisfiedorverysatisfied.

Oneofthemanyhighlightsoftheconferenceisthetechnologyandserviceexposition.Infact,theopportunitytointeractwithexhibitorsisoneofthemosthighlyrated

reasonspeoplegiveforattendingtheconference.In2008,67exhibitboothsdisplayedproductsandinformationrepresentingthelatestinassis-tivedevicesandprosthetictechnology.Tenoftheleadingmanufacturersintheprostheticindustryofferedtechnologyseminarsfocusedonspecificcomponents.

Participantsalsospenttimeatthenonprofitboothslearningmoreaboutlocalandnationalservicestoenhancetheirlivesandassistintheirreintegrationintotheircommunity.

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Crawford learned to do many things, but more than anything wanted to be able to wear gym shoes with laces – even though she wasn’t allowed to participate in gym class.

15

Crawfordlearnedtodomanythings,butmorethananything,shewantedtobeabletoweargymshoeswithlaces–eventhoughshewasn’tallowedtoparticipateingymclass–insteadofthelessstylishVelcroshoes.So,herfathersetthechallenge:Hewouldbuyhergymshoeswhenshecouldproveshecouldtiethem.Whenherphysicaltherapistgotfrustratedwithherinabilitytotieashoe,Crawfordaskedherifshecouldtieashoeone-handed.Whenthetherapistadmittedshecouldn’t,Crawfordleftphysicaltherapytellingherparentsthatshewouldfigurethingsoutonherown.

Small Things Make a Big Difference “When I finally learned

how to tie shoes, my dad still wouldn’t get me regular gym shoes

because he said they had to be tight,” Crawford says.

“I had to perfect the tying technique until the

laces were tied to fit.”

As a child, Donna Crawford lost the use of her right arm when she was 6 years old. During a rescue from a car fire after an accident, she was yanked by the arm, which severed the main functioning nerve from her spine. Her arm was paralyzed, and for years afterward she went to physical therapy sessions 3 days a week.

Ittook11-year-oldCrawfordafewmonthsbeforeshecouldtiehershoes.“WhenIfinallylearnedhowtotieshoes,mydadstillwouldn’tgetmeregulargymshoesbecausehesaidtheyhadtobetight,”shesays.“Ihadtoperfectthetyingtechniqueuntilthelacesweretiedtofit.”

Duringthoseformativeyears,Crawfordshoweddeterminationdespitethefactthatadultsweresometimesdismissiveandpeerswereoftencruel.“Iwascalled‘one-armedbandit’or‘one-armedfreak,’”sheremembers.Itwasonlyasayoungadult,whenherparalyzedarmbegantoturnpurplefromlossofcirculation,thatshebecameanamputee,and,asaresult,feltthefreedomthatnothavingherarmwouldbring.“Icanhonestlysaythatthesurgeryshouldhavehappenedyearsbeforeitactuallydid,”shesays.

Crawford’soptimismisrelentless,butsheknowsshewouldhavebenefitedgreatlyfromapeersupportsystemwhenshewasyounger,whichiswhywhensheheardabouttheAmputeeCoalitionYouthCamp,shejumpedatthe

opportunitytovolunteer.Shedescribesthewholeexperienceasnotonlythehighlightofheryear,butoneofthegreathighlightsofherlife.

Sometimesit’sthesmallestinteractionsthatcanhaveaprofoundimpactonsomeoneelse.TheeventthatmadesuchabigimpressiononherwasonethattookCrawfordbacktothedayswhenshestruggledwithtyinghershoes.SomeoneintroducedCrawfordtoayoungcampernamedDanielwhohadalsolosthisrightarminacaraccident.He’dbeenanamputeeforacoupleofyearsandwasstilltryingtotiehisshoes.LikeCrawford’stherapist,hisoccupationaltherapistwasnotsureifhewouldeverbeabletotiehisshoesone-handed.ThenCrawfordcamealongandwithasimpledemonstrationhelpedmakehislifealoteasier–andgavehimagooddoseofencourage-menttoo.“WhenIshowedhimhowtotiehisshoes,helearnedinabout5minutes,”shesays.“Hejustgavemethebiggestsmile.”

Sometimesthesmallestthingsmakethebiggestdifference.

16

“When I showed him how to tie his

shoes, he learned in about 5 minutes,”

Crawford says. “He just gave me the biggest smile.”

Sometimes the smallest things make the

biggest difference.

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TheAmputeeCoalitionYouthCamp’sninthyear(2008)sawarecord63campersjoiningstaffandvolunteercounselorsforthechallenging5-dayprogram.ThecampwasheldforthefirsttimeattheJoyOutdoorEducationCenterinClarksville,Ohio,whichwasselectedtoenabletheACAtoaccommodatemorecamperswithoutturninganyyouthsaway.

Sinceitsbeginning,thecamphashostedmorethan450camperswithlimblossorlimbdifferencefrom42statesandthreecountriesandhasworkedwithmorethan100volunteerstomentoryouthcampers.Leadershiptrainingisprovidedfor17-year-oldcamperstopreparethemtobefuturecampcounselorsandleadersintheirschoolsandcommunities.

Amputee Coalition Youth Camp Hosts Record Number of Campers

“Now, I know I can do anything!” – Bryanna

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Theyouthcampexperienceisfilledwithavarietyofactivitiesdesignedforfun,learningandbuildingself-esteem.Oneexampleisthefullyaccessibleropescourse,whereeverychildcansethisorherownpersonallevelofchallenge.Thoughcampersaresometimeshesitanttoparticipateinsucheventsatfirst,theyoftenovercometheirhesitationandlearnthattheycandomorethantheyeverexpected.

Bryanna,abilateralabove-kneeamputee,wasoneofthese.Atfirst,shewasafraidofnotbeingabletoreachtheziplinebecauseshewouldhavetoclimbthelastfewfeetupapole.Withencour-agementfromstaffandvolunteers,however,shemadeit!Assherodedownthezipline,hersmile

litupthecamp.“Now,IknowIcandoanything!”sheexclaimed.

YoungcamperslikeBryannaalsoparticipateinpeerdiscussiongroupsfacilitatedbyoldercampersandamputeementorswhohelpthemrealizethattheyarenotalone.Emphasizingthispoint,thecamphostssocialeventseachnightthatoffercamperstheopportunitytoenjoydancing,performing,role-playingandotheractivitieswithoutthefearoffeelingdifferent.

Otherdailyactivitiesatcampinclude:•Fishing•Canoeing•Archery•Teamfieldsports•Tennis•Swimming•Basketball•Educationalprograms.

Inadditiontofeelingbetteraboutthemselvesbecauseofthecampexperience,evaluationsindicatethatthemajorityofcampersplantoexercisemore,eathealthierfoodsandbemoreengagedinsports.

Deborah,whowasbornwithabilateralabove-elbowlimbdifference,hadbeenattendingcampsince2004andwasoriginallyhesitanttotryseveralcampactivities,includingtennis.Afterthe2008camp,shewrote,“Ihavebeentakinguptennis,andIamjoiningthetennisteamatschoolbecauseItrieditatcampmyfirsttimeandlovedit!TheACAyouthcampismyyear’shighlight.Thankssomuch!”

Withoutherexperienceoftryingnewactivitiesinthesafecampenvironment,Deborahmighthaveneverattemptedtotryoutforherschooltennisteam.

“Any ordinary favor we do for someone or any

compassionate reaching out may seem to be going nowhere at first, but may

be planting a seed we can’t see right now. Sometimes we need to just do the best we can and then trust in

an unfolding we can’t design or ordain.”

– Sharon Salzberg

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InOctober2008,theAmputeeCoalitionofAmericagraduateditssecondclassofVolunteerOutreachTeam(VOT)memberstohelpreachintomorelocalcommunitiestoraiseawarenessoftheACA’smissionandavailableresources.Thisbroughtthetotalnumberofthesededicatedandenthusiasticvolunteersaroundthecountryto31members.

VOTmembersrepresenttheACAatlocaleventssuchashealthfairsandmaymakepresentationstogroupssuchascivicclubs,hospitalstaff,supportgroupsorevenhealthcareproviders.Othersworkwiththeirlocalmediatoraiseawarenessandworktoreachmoreofthenearly2millionamputeeswhocouldbenefitfromaccessingtheACA’sprogramsandservices.

TheseandthenumerousothervolunteerswhohelptheACAreachouttoamputeesandothersaroundthecountryareessentialtohelpingusaccomplishourmission.

ACA Trains 2008 Volunteer Outreach Team to Spread the Word

Volunteer Outreach Team 2008 Graduates

RoseBissonnetteBillBrannanChrisCasteel

PaulaGolladayTammieHigginbotham

RoseMaloneyStormyMcDonald

TerriRossLisaSpeckman

C h a n g i n g L i v e s Through Support

“At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us.”

– Albert Schweitzer

CarolynMcKinzieisa41-year-oldnurseandabelow-kneeamputee.Despitehermanyyearsofnursingexperience,shewasill-preparedforthephysicalandemotionalchallengesshewouldfacewhenshebrokebothofherlegsinanautomobileaccidentin1998.Overthenext2½years,shehadnearlyadozensurgeriesinattemptstosalvageherrightleg.ShefinallylostthelegbelowthekneeinApril2001.Asbothanurseandapatient,sheknowsthattheareamostlackingininformationandsupportforimpendingornewamputeesisthatofemotionalsupport.

Theperiodfromwhenshewastoldthatshewouldhaveheramputationuntilsheactuallyhadthesurgerywasthemostdifficultmonthshewouldeverface.Shewasangryandscared,andwonderedwhatwouldbecomeofher.Shetriedtobestrongforherfamily–theyhadallbeensohelpfulandsupportivealongtheway–but,sadly,shesufferedinsilence.

The Most Difficult Kind of Lesson

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“As a nurse, I was the first one in line to tell others that being an amputee doesn’t mean you have to settle for less.” – Carolyn McKinzie

In2004,shebeganwritingabookaboutherexperiencewithlimbloss.Shewassurprisedathowlittlesheknewaboutthewholeprocess,consideringthatshewasa10-yearhospitalnurse.Shewasalsosurprisedatthelackofinformationthatwasavailableatthetimeofheramputation.Sincethen,shediscoveredtheAmputeeCoalitionofAmericaonherownandhasacquiredsomevaluableinformationfromtheACAthathashelpedheralongtheway.

Theweeks,daysandhoursbeforeheramputationwasanoverwhelmingandsadtimeforher,andshewonderedifshewouldevergetthroughit.Shedidgetthroughit,however,and6monthsafterheramputation,shedancedinacrowd.“NobodyknewhoworwhyIwasdifferent,”sherecalls.

Shewould,however,facemanymorehurdlesafterthat.“Infact,Irecentlyendeda2½yearrelationshipthatwas,inhindsight,badfromthebeginning,”shesays.“Afterward,IspentalotoftimetryingtofigureoutwhyIhaven’thadonesuccessfulrelationshipsincelosingmyleg.IfinallyrealizedthatI‘settle’formenwhoaren’tthetypeIamreallylookingfor.”

McKinzienowsaysthatherproblemallalonghasbeenthatshedidn’tthinkthetypeofmanshewantedtobewithwouldalsowanttobewithherbecauseofherleg.

Theironicpart,assheseesit,isthatasanurse,muchofherjobhasinvolvedpatienteducation.Sheteachespatientsaboutacceptingtheirbodiesafteramputationandthatlosingabodypartdoesn’tchangewhotheyareorwhattheywantinlife–thattheydon’thavetosettleforanythinglessthanwhattheywantedinlifebeforetheiramputation.

“Asanurse,Iwasthefirstoneinlinetotellothersthatbeinganamputeedoesn’tmeanyouhavetosettleforless,”shesays“Still,sincemyamputation,that’swhatIhavebeendoing.Iguessunderstandingallofthisishalfthebattle.”

Shenotesthatoneofthetoughlessonsfromherexperiencewasthatbeinganursedidn’tmakeherabetterpatient.Ontheotherhand,sheknowsthatbeingapatienthasdefinitelymadeherabetternurse.

“As both a nurse and a patient, I know that the area most lacking in information and

support for impending or new amputees is that of emotional support.”

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“If the ACA had a Shari in every community, we would not leave any amputee behind.” – Charlie Steele

Threeyearsand15operationsafteratraumaticaccidentledtoherbelow-kneeamputation,ShariCaradonnawasstillnotabletoreturntotheworkshelovedasaphysicaltherapist,acareershehadheldfor26years.

Sheremembersapeervisitthatbrightenedherwholeoutlookabouttheprocessshewasabouttogothrough.“Itwasincrediblyfrightening,”shesays.“Iaskedhertowalkbackandforthintheroom,totakeherlegoff,justsoIcouldseewhatitlookedlike.”Thepeervisitorofferedherencouragementthroughwords,butallCaradonnacaredaboutwasthatthewomanwaswalking.“Itchangedeverythingforme,decreasingmyanxietyandfear,”shesays.

Paying It Forward

23

Astheshockofamputationworeoff,andwithtimetoheal,CaradonnaeventuallylearnedmoreabouttheACAanditsmission.Sheheardaboutthepeertrainingprogramanddecidedtogiveitawhirlsinceshewasbrimmingwithdesiretogetbacktohelpingothersone-on-one.Withherenthusiasmbubblingover,sheattendedthefirsttrainingshecould,drivingfromherhomeinLongIsland,NewYork,toAllentown,Pennsylvania,becauseshedidn’twanttowaitseveralmoremonthstoattendoneclosertoher.

There,Caradonnawasinspiredbyhertrainer,CharlieSteele,whoisalsoamemberoftheAmputeeCoalitionofAmericaBoardofDirectorsanditsMedicalAdvisoryCommittee.Steelealwaysurgeshistraineesnottositaroundandwaitforthephonetoringwithreferralsforpeervisits.Hesuggeststhattheybeginbyapproachingthehospitalwheretheyweretreatedandbranchoutfromthere.Withindaysofthetraining,Caradonnacalledaskingformoreideas.Caradonnawasfrustratedthatshecouldn’treturntoherworkasaphysicaltherapist,

Shari Caradonna remembers a peer visit

that brightened her whole outlook about the process she was about to go through.

“It was incrediblyfrightening,” she says. “I asked her to walk back and forth in the room, to take her leg off, just so I could see what it looked like.”

butwhenshebecameacertifiedpeervisitor,sherealizedthatshecouldstillconnectwithothersandhelpthemrealizetheirfullpotential.

WithSteele’sguidance,Caradonnareached10ofthe12hospitalsonLongIslandwithin6monthsofherpeertraining.She’sconducted27peervisitstodate,evengoingfaroutofherwaytoestablishcontactwithamputeesshehearsaboutinhercommunity.SteelenotesthatCaradonnastandsoutbecauseofthenumberofvolunteerhourssheputsin.“IftheACAhadaShariineverycommunity,wewouldnotleaveanyamputeebehind,”hesays.

Testamenttothisisarecentpeervisitthattookalongtimetoarrange.AftertwofriendscontactedheraboutabrushwithawomannamedLaurawhohadlostherlegabovethekneeinamotorcycleaccident,Caradonnadecidedtotrytotrackherdown.ShecontactedtheownerofthesalonwhereLaurahadpreviouslyworkedandreceivedacurtresponse:“Idon’tthinkshewantstotalktoanyonerightnow.”

24

CaradonnapleadedwiththeownertopassalonghernumbertoLaura,tonoavail.AfterathirdpersontoldheraboutLaura,Sharidecideditwasjusttoomuchofacoincidenceanddecidedtoshowupinpersontothesalon.Againshepleadedwiththeowner,explaininghowimportantthepeervisitwouldbe,butshereceivedthesameresponse.

Finally,thereceptionist,whooverheardtheconversation,decidedtocallLauradirectlyandfindoutifshewouldliketospeakwithCaradonna.“ShecamebackoutandtoldmethatLaurawouldlovetobecontacted,”saysCaradonna.“Tearsstartedstreamingdownmyface.”

ThepeervisitwasanimportantbreakthroughforLaura,whowasunabletomoveforwardwiththerapybecauseherinsurancerefusedtofootthebill.CaradonnamadeafewphonecallsandsetLauraupwithherprosthetistandthenaphysicaltherapist,bothofwhomagreedtotreatLaurapro bono.WhenCaradonnasawherwalkforthefirsttimein4months,sheshedevenmoretearsofjoy.“It’sjustamazingtobeabletohelppeoplelikethat,”shesays.

Caradonna was frustrated that she couldn’t return to

her work as a physical therapist, but when

she became a certified peer visitor, she realized

that she could still connect with others

and help them realize their full potential.

25

A strong support system is an essential element to a complete recovery from a traumatic experience, such as limb loss.

26

ACA’s Peer Visitor Program Has Trained and Certified More Than 1,000 VolunteersBytheendof2008,theACAhadtrainedandcertifiednearly1,100volunteerstoprovidepersonalizedpeersupport,includingmilitarypeervisitorsandfamilypeervisitors.Forthefirsttime,atrainingwashostedinthestateofAlaska,inAnchorage.Thoughprofessionalscannotbecertifiedunlesstheythemselvesareamputees,theyfrequentlyattendthetrainingstolearnmoreabouttheprogram.

Indescribingtheirneedsthroughin-depthinterviewstheACAconductedin2007,parentsspokeofwell-intentionedfamilyandprofessionalswhotriedtocomfortthem,saying“EverythingwillbeOK.”Parentsreportthatsucheffortsoftenonlymadethemfeelevenmorealone.Theythink:“Howdoyouknow?”

Thisiswhereconnectionwithanotherparentwhohasbeenthroughthesameexperiencecanmakeapivotaldifference.Learningaboutthesuccessesofanotherchildwiththesamelimblossordifferenceinstillsparentswithmuch-neededhope.

Atthebeginningof2008,theACAconductedtwopilotparentpeersupporttrainingstoevaluateandtestthenewtrainingprogram.Bytheendoftheyear,theACAhadcertified30parentsfortheParentSupportNetworkthroughourfull-daytrainingsinMinneapolis,Minnesota;Dallas,Texas;Atlanta,Georgia;andLongIsland,NewYork.Thededicatedparentswhovolunteertoparticipateinthesetrainingspassionatelybelieveinthemonu-mentalimportanceofpeersupportforparents.Infact,itisoftendescribedasa“lifeline”byparentswhowerefortunateenoughtobeconnectedwithapeerintheirhourofgreatestneed.

The Power of Peer SupportInAugust2008,theACAbeganprovidingonlinerecertificationtrainingtoupdatepeervisitorsonprogramchangesandtoreemphasizeimportantaspectsofeffectivecommunication,theheartbeatofasuccessfulpeervisit.ThetrainingisflexibleenoughtoaccommodatepeervisitorswhodonothavereadycomputerandInternetaccess.

ACA’s Parent Support Network Offers “Lifeline” to ParentsWhatparentswouldn’ttakeonalloftheirchild’spainandsufferingifonlytheycould?Livingwiththisimpossibility,parentsrepeatedlytelltheACA,isanintegralpartofthedeepanguishthatconfrontstheminthewakeoftheirchild’sbirthwithalimbdifferenceortheirchild’slimblossduetoamputation.Parentsfacingsuchaninitialtraumaareoverwhelmedwithamixtureofveryintensefeelingsandhavenumerousquestions.

27

ACA Helps Seed New Support Groups at Every OpportunityAstrongsupportsystemisanessentialelementtoacompleterecoveryfromatraumaticexperience,suchaslimbloss.Supportgroupscanbeaninvaluableresource,offeringopportunitiestoconnectwithotherswhohavebeenthroughasimilarexperienceandwhoare“furtherdowntheroad”towardanidealadjustment.Theyprovideasafe,supportiveenvironmentfordiscussingandpracticingnewcopingstrategiestohelpmembersgetthere.

Whilenoteverycommunityisfortunateenoughtohaveanamputeesupportgroup,theACAstrives

tohelpseednewgroupsateveryopportunity.In2008,112supportgroupstartuppacketsweresentoutandtheACASupportGroupManual

Amputee Coalition of America’s National Peer Network Receives Three Grant AwardsFunding from the Department of Veterans Affairs, the Langeloth Foundation and the Wounded Warrior Project helps the ACA expand its peer support initiatives

wasupdated.TheACAalsoprovidedconsultationswithsupportgroupleadersbyphoneandheldaSupportGroupLeadersWorkshopinJuneattheACANationalConference.

Newin2008wasthecreationofanonline,24-hourpeersupportforumexclusivelyforpeoplewithlimbloss–theAmputeeCommunicatorForum.Thisforumhelpsmeetthesupportneedsofamputeeswhodonothaveasupportgroupintheirareaorwhoarephysicallyoremotionallyunabletoattendone.Forummemberscansimplylogonandreadothers’posts,postreplies,orcreatetheirowntopicsandstartnewthreadsofconversation.

In2008,theAmputeeCoalitionofAmerica(ACA)receivedthreegrantawardstoexpandtheactivitiesoftheNationalPeerNetwork.Inannouncingthefundingawards,PaddyRossbach,RN,ACApresident&CEO,said,“Eachofthesenewprojectsbuilds

onthesuccesswehavehadindevelopingmaterialsandimplementingpeersupportforcivilians,militarypersonnelandveterans.Peersupportisacriticalelementinrecoveryfromtrauma–fortheinjuredandtheircaregivers.”

Department of Veterans Affairs Train-the-Trainer ProjectTheprimarygoaloftheprojectwillbetoincorpo-rateaPeerVisitation(PV)programforpeoplewithlimblossintoeachofthe21VeteransIntegratedServiceNetworks(VISNs).

28

Langeloth Foundation Caregiver ProjectTheLangelothFoundation’spurposeistopromoteandsupporteffectiveandcreativeprograms,practicesandpoliciesrelatedtohealingfromillness,accident,physical,socialoremotionaltraumaandtoextendtheavailabilityofprogramsthatpromotehealingtounderservedpopulations.Acurrentpriorityforthefoundationistoprovidesupportforprogramsthataddresstheneedsofcaregivers.

Thegoalsofthisprojectareto:•Establishacaregiverpeervisitorprogramfor caregiversofservicemenandwomenwith newcombat-relatedpolytraumaorblast-related injuries•Evaluatetheeffectivenessofthetraining materialsandthetrainingprogram•Evaluatetheeffectivenessofthecaregiver peervisits.

Wounded Warrior Project Peer Mentoring ProjectThepurposeoftheWoundedWarriorProject(WWP)istoraiseawarenessofandenlistaidfortheneedsofseverelyinjuredservicemenandwomen;helpseverelyinjuredservicemembersaidandassisteachother;andprovideunique,directprogramsandservicestomeettheirneeds.

Thisprojectprovidedaframeworkforincorporatingapeermentoringprogramforpeoplewitharangeofinjuriesresultingfromcombat(e.g.,PTSD,BRI,

burns,SCI,visionlossandimpairment)intositeswithWWPpresence.

TheACAprovidedtechnicalassistanceandcontent,developedapeermentoringmanualandtrainers’manualfortheWWPbased

upontheACA’sexistingstandardizedpeervisitormaterialsandtraining

protocol,andcertifiedseventrainers.

C h a n g i n g L i v e s Through Advocacy

“Alone we can do so little; together we can do so much.” – Helen Keller

EileenCasey,asinglemotherofthreecollegestudents,foundoutshehadosteosarcomaonedayin2006andwastoldherlifedependedonhavinganamputation.Thenextweekshewasatranstibial(below-knee)amputee.However,thestressoflearningshehadcancerandthenbecominganamputeewasonlythetipoftheiceberg.WhileCaseywentthrough42weeksofchemotherapy,shediscoveredthathermedicalinsurancehadacapof$10,000forprostheticcare.Theproblemwas,hertemporaryprosthesishadalreadyreachedthislimit.

Caseyhadastrokeofgoodfortuneamidallthisnegativenews.ShehadsoughtfinancialassistancefromVermontVocationalRehabilitation(VVR)andwasmovingtowardtakingoutabankloanwhenVVRofferedtoprovidethefinancessheneededtopurchaseaprostheticlimb.

However,Caseydidn’tforgetthatfeelingofdesperation,andsheknewthattherewerethousandsofotherslikeherwithdifferentstoriestotellabouthowtheirinsurancecompanywouldn’tpayforanarmorlegthattheyneededtogetbackontracktolivingandworking.

Usinghercourageandconviction,sheapproachedherstatesenator,DougRacine(D-VT),whowasthechairoftheHealthandHumanServicesCommitteeinthe

Cancer Survivor Teams With ACA to Fight for Fair Prosthetic Coverage

Her story is special because, through it, many amputees see their own convoluted struggles.

30

Vermontstatelegislature.ShefirsteducatedherselfontheissuesbyreadingtheACAWebsite,andthenaskedSenatorRacinetosponsoraparitybill.Toherdelight,andthedelightofadvocatesforamputeesthroughoutthestateofVermont,heintroducedthelegislationonJanuary1,2008.

Caseyusedlogictoappealtothelegislatorsatthesenatehearings.Shesaidthatitmadenosensethatwhilesheandheremployerpaidinsurancepremiums,shereceivednocoverage,butthatifshehadstoppedworkingandgoneonMedicareorMedicaid,she’dhave80percentcovered.Shestillhadmanyworkingyearsleftinher,afterall,andshedesiredtobeaproductive,tax-payingmemberofsociety.

Whilethislogicwaspersuasive,thesenatorswereevenmorecompelledbytheactualprostheticlegthatshebroughtforthemtolookat.Mosthadneverseenone,letaloneheldoneupclose,anditgavethemabetterunderstandingofhowimportantitisforamputeestoreceiveaprostheticlimbtoenablethemtoreturntowork.ThroughCasey’spowerfultestimonyanddedicationtothecause,onApril23,2008,Vermontbecamethe10thstatetopassparitylegislation.

Ironically,thebillthatCaseyhelpedpasswouldhelpmanypeople,butsincehercompanywasself-insured,shestillwasn’tgoingtoseeanycoverage.

Now,Caseyistakingherstorytothenextlevelandappealingforfederalinsuranceparity.Herstoryisspecialbecause,throughit,manyamputeesseetheirownconvolutedstruggles.Yetshehasrefusedtogiveinorgiveup.Asaresult,Casey’scouragecontinuestoinspireotherstogetinvolvedinthisimportantstruggleaswell.

Note: No funding from the Centers for Disease Control and Prevention (CDC) is used to support ACA advocacy efforts.

Eileen Casey didn’t forget that feeling of desperation, and

she knew that there were thousands of others like her with

different stories to tell about how their insurance company

wouldn’t pay for an arm or leg that they needed to get back on track to

living and working.

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The ACA will continue to fight for access to care for amputees of every age at both the state and federal level.

32

The past couple of years have been a roller coaster ride for the Amputee Coalition of America’s (ACA’s) Advocacy Department. The department has had many successes and also faced its share of challenges. The staff, with the help of many others, has built a national campaign from the ground up and has helped build campaign committees, lobby lawmakers, create resources and provide day-to-day technical assistance for each of the state bills.

ConnecticutInFebruary2008,nearly100amputeesfloodedthestatecapitolinConnecticuttolobbyforthestateparitybill.Workingwiththelocalcampaigncommit-teeandlocalHangeroffices,theAmputeeCoalitionofAmericaorganizedaseriesofeventsinsupportofaccesstocare.ThedaykickedoffwithapressconferenceontheCapitolsteps,andtheeventwascoveredbythreetelevisionstations,tworadiostationsandthedailynewspaper.

Full Speed Ahead in the Fight for Parity

Afterthemediaevent,agroupofprosthetistsandlocalamputeessetupaneducationalpresentationinthelegislativeofficebuilding.Theystaffedtablesthroughoutthedaytoprovideinformation,answerquestionsandencouragesupportforthebill.

ParticipantsalsoattendedlobbymeetingswithmembersoftheInsurance&RealEstateCommitteeandthelegislativeleadership.Eachparticipantalsomadesuretostopbyandtalkwithstafffromtheirownrepresentative’soffice.

Eventslikethisonewereheldalloverthecountrytobuildmomentumbehindthisimportantlegislation.

Fifteen parity bills were considered by state legislatures during the 2008 legislative session. The hard work of our local activists combined with our expertise and guidance resulted in the enactment of four new laws, bringing the total to 11 states with statutes protecting access to prosthetic devices. Furthermore, five of the laws also provide protections for orthotic benefits.

33

New JerseyAt8:45pmonthelastlegislativedayofthe2008session,theNewJerseylegislaturepassedabillensuringaccesstocomprehensivecoveragefororthoticandprostheticcare.Itwasalonganddifficultroad.TheACAandouralliespushedhardforseveralyearstokeepthebillalivethroughcountlesscalls,e-mails,lettersandlobbymeetings.NewJerseyenactedtheparitybillwithanamend-mentthatwouldalsoextendandensurecoverageforgovernmentemployeescoveredbytheNewJerseyStateHealthBenefitsProgram(SHBP).

VermontSponsoredbysenatorsDougRacine(D-VT)andGinnyLyons(D-VT),SenateBill280wasintroducedintheVermontGeneralAssemblyinJanuary2008.TheVermontSenatewentontopassthebillunanimously.Thesponsorrecognizedtheleadactivist,EileenCasey,andsharedherstorywiththeSenate(see page 30-31).TheHousewentontopassthebillonTuesday,April1.ItwaslatersignedinabillceremonybyGovernorJimDouglas.

IndianaIndianaprosthetistsAllenDolberryandKevinHagemeierapproachedtheACAtohelpthembuildanIndianaparitycampaignin2007.AlongwiththehelpoflocalactivistMarifranMattson,theyformedtheIndianaAmputeeInsuranceProtectionCoalition.WeworkedwiththemtoholdaseriesofcoalitionandorganizingmeetingsinJulytohelpkickstartthecoalition’sefforts.

TheywereinvitedtotestifybeforetheHealthFinanceCommissioninSeptember,whichhelpedthemtosecurealliestosponsorthebill.InJanuary2008,SenateBill269wasintroducedbySenatorGaryDillon(R-IN).HouseBill1140wasintroducedbyRepresentativeMikeMurphy(R-IN).Thebillflewthroughcommitteesandthroughbothchambers.Becausetwodifferentversionspassed,ithadtogothroughaconferencecommitteetodecidewhichversionwouldmoveforward.Weworkedhardtoensurethatthebillremainedstrong.Afterseveralweeksofdiscussionandmanymeetings,theconferencecommitteesentthebillout.ItwasthenpassedonFriday,March14,andsignedintolawbyGovernorMitchDaniels.

Louisiana2008wasthefirstyearforaparityeffortinLouisiana,buttheextremededicationofthelocalgroupresultedinpassage.ThebillpassedoverwhelminglyoutoftheHouse(69to32),and,withtwoadministrativeamendmentsintheSenate,itsoaredthrough(26to7).Thegovernortoldthepresshewasanxioustosignthebillintolaw,butweranintosomeverycreativeanddeterminedopposition.Anattemptwasmadetosendthebilltoconferencecommitteetokillit,butthecommitteewasabletogetitthroughandsignedintolawbyGovernorBobbyJindal.

Maryland, Utah, Nebraska, Virginia and Other StatesAstheweatherheateduplaterintheyear,sodidthefightforprostheticparity.Throughoutthesummer,thestatecampaigncommitteesworkedhardtogetreadytolaunchsuccessfulcampaignsintheupcominglegislativesession.Maryland,Utah,NebraskaandVirginiaworkedoncollectingdataandstatisticsrelatedtoparityinordertostrengthentheirpushinthenextlegislativesession.Manystatesalsocoordinated

We have made great strides in a fairly short period of time. We could not have done any of this without the hard

work of activists all over the country.

communitymeetingstoraiseawarenessandbuildsupportamonglocalprosthetists,amputees,andtheirfriendsandfamilies.

MissouriTheMissouricampaigncommittee,knownastheMissouriCoalitionforPeoplewithLimbLoss,heldasummerbarbecueandwashertossonAugust9inDesPeresPark.Whileitistemptingforpeopletosimplyloungeonthebeachinthesummer,theACAisthankfulthatouractivistscontinuedtoworkhard.

On the Federal LevelThepassageoffournewlawsin2008,alongwithmanylocalinitiativestointroducebillsinthecomingyear,helpedusbeginthemuch-neededfightforlegislationatthecongressionallevel.Thus,2008sawourfirstconcentratedcongressionalefforttoextendprotectionstoplansthatareregulatedbythefederalgovernmentandensureaccesstocareineverystate.

OnMarch13,theU.S.Congressintroducedthe“ProstheticParityActof2008”(HR5615).HR5615providesinsuranceparityunderemployer-paidandgrouphealthinsurancecoverageforprostheticdevicesandcomponents.

ItwasintroducedbyRepresentativeRobAndrews(D-NJ),alongwithRepresentativesGeorgeMiller(D-CA),ToddPlatts(R-PA),MarioDiaz-Balart(R-FL),andLincolnDiaz-Balart(R-FL)signingonasoriginalcosponsors.

Tobuildsupport,theACAorganizedanationalweekofactionfromApril26-May2.Localsupportersplannedhouseparties,gatheredpostcards,andheldmeetingsinthedistrictofficesoflocalmembersofCongress.Therewereover98eventsin89differentcitiesin35states.Over10,000postcardswerecollectedbysupporters.

ThepostcardsthatwerecollectedwerebundledanddroppedoffbyvolunteersfromtheWashington,

D.C.,areainMay.LocalactivistsjoinedtheACAadvocacystaffontheHillasthousandsofpostcardswerehand-deliveredtotheofficesofeachmemberofCongress.

OnJune11,activistsfromalloverthecountryconvergedonCapitolHillfortheAmputeeCoalitionofAmerica’sfirstannuallobbyday.TheparticipantsmetwiththeirHousemembersandsenatorstourgethemtosupportthefederalparitybill.MemberscontinuedtoholdmeetingsbackathomewithmembersofCongressintheirdistrict

officesduringthesummerrecesses.

Afterthestrongorganizingeffortsthroughoutthesummermonths,theACAwaspleasedtoseeafederalparitybillintroducedintheUnitedStatesSenatewithbipartisansupportinSeptember.S.3517,the“ProstheticParityActof2008,”wascosponsoredbySenatorsOlympiaSnowe(R-ME),TomHarkin(D-IA),DanielInouye(D-HI),andRussellFeingold(D-WI).

Volunteers Helped Make It PossibleTheACAhasmadegreatstridesinafairlyshortperiodoftime.Wecouldnothavedoneanyofthiswithoutthehardworkofactivistsalloverthecountry.

34

35

AlberthaJackson-Smithisoneofthosetirelessvolunteers.SheispartofthesmallbuthardygroupofvolunteerswhohavebeenworkingwithustopushforabillintheMarylandlegislature.Jackson-Smithwasinspiredtotakeonthiscauseforherson,Lorenzo.

LorenzoSmithlosthislegwhenaspeedingcardrivingonthewrongsideoftheroadveeredontothesidewalkandstruckhimonhiswayhomefrommiddleschool.Becauseofrestrictionsonhishealthinsurancecoverage,doctorsestimatedthathisparentswillspendanaverageof$15,000ormoreperyearforthenext7to10yearstoprovidehimwithprostheticcare.

HeisjustoneexampleofthethousandsofyoungamputeesacrosstheUnitedStateswhosehealthandqualityoflifearebeingimpactedbyarchaicinsuranceregulationsthathaverestrictedoreveneliminatedcoverageforprostheses.BillsliketheoneinMarylandwillensurethatprosthesesarecoveredonparwithotherbasicmedicalservices.

WehavealreadyseenthedifferencethatparitybillscanmakeinthelivesoffamilieslikeLorenzo’s.TheACAwillcontinuetofightforaccesstocareforamputeesofeveryageatboththestateandfederallevel.Note: No funding from the Centers for Disease Control and Prevention (CDC) is used to support ACA advocacy efforts.

MichelleGilligan-PrichardmovedtoNashvilletopursueherdreamofbecomingasuccessfulcountrysinger.Havingwornaprostheticlimbsinceshewas18monthsold,shewasshockedtofindoutthatherinsurancecompanyinTennesseewouldnotcoverthecostofherleg.Shedecidedtodosomethingaboutitnotonlyforherselfbutforallamputees.

SheorganizedthefirstannualparitybenefitconcertfortheAmputeeCoalitionofAmericaandtheMendingLimbsOrganizationinFranklin,Tennessee.TheeventwasheadlinedbyKixBrooksoftheaward-winningcountryduoBrooksandDunn.

Brooks,JenniferHanson,BaillieandtheBoys,Nashville StarcontestantJoshuaStevens,SuttonParks,andToddSansomallperformedalongwithMichelleGilligan-Prichard.

TheconcertwasaimedatraisingawarenessabouttheneedforprostheticparitylegislationinTennesseeandacrossthecountry,andtheproceedshelpedsupporttheACA’sadvocacyprogram.

Thefundingandmediacoveragefromthefirstannualbenefitsurelyhelpedtobuildandenhance

supportforprostheticparityastheACApreparedtoadvancelegislationinthe2009legislativesession.Thestatelawwouldensurethatamputeeswithhealthinsurancehaveaccesstoprostheticcarebycreatingaconsistentstandardforbenefitsandfinancialrequirementsinprivateinsurancecoverage.

TheconcertalsoprovidedsupportfortheMendingLimbsOrganization,anewfoundationestablishedtoprovidefundingforprostheticcareforamputeesinTennesseewhosehealthinsurersseverelylimitcoverageforprostheticlimbs.Dozensofcharitablefoundationsarestartedeveryyeartomeettheneedsofamputeeswhoseinsurancecompaniesaredenyingthecaretheyneedtoleadfullandindependentlives.ThatiswhyitisimperativefortheACAtocontinueoureffortstopassparitylegislation.WiththepassionandcommitmentofadvocateslikeMichelleGilligan-Prichard,wewillcontinuetosucceed.

Amputee Activist Joins Country Legend in Pushing for Prosthetic Parity

Note: No funding from the Centers for Disease Control and Prevention (CDC) is used to support ACA advocacy efforts.

C h a n g i n g L i v e s : The Numbers Behind the Faces

“Statistics are human beings with the tears wiped off.” – Paul Brodeur

37

TheAmputeeCoalitionofAmerica(ACA)isanonprofitorganizationandthenationalleaderindevelopinganddisseminatinglimblossinformation,includinginformationonbestpracticesinclinicalimprovementandcaremanagement.In2008,theACAanalyzedtheeffectofourvariousoutreachinitiativesanddocumentedthefollowingimpact:

Lives BenefitedNumberofACA-CertifiedPeerVisitors.................... 1,057NumberofPeerVisitsReported............................... 3,632FactSheetsDistributed............................................ 49,041WebSiteVisits......................................................... 2,263,203UniqueWebSiteVisitors......................................... 409,393NationalConferenceAttendance............................. 874SupportGroups....................................................... 300YouthCampers........................................................ 86

Community OutreachEveryyear,theACAconductsandparticipatesineducationaloutreachandeducationalactivities.National,RegionalandLocalExhibits..................... 53National/RegionalPresentations............................... 63

The People of the Amputee Coalition of AmericaBoardMembers....................................................... 10TotalEmployees....................................................... 26MedicalAdvisoryCommitteeMembers................... 13

Mission Impact – A Statistical Overview

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Revenue Grants 62% $1,869,041Sponsorships 2% $67,342Contributions 7% $222,698Advertising 13% $376,172Memberships 8% $248,940MeetingReg. 4% $111,543Sales 2% $72,892Interest 0.84% $25,166 $2,993,794 Expense Grants 44% $1,366,455Publications 6% $195,375Advocacy 9% $268,835AnnualMeeting 6% $175,699Membership 3% $97,800YouthPrograms 3% $108,555Partnerships/NPN 1% $22,672Administration 19% $591,892FundRaising 9% $280,719 $3,108,002 NetIncome -$114,208

2008

F i n a n C i a L s u m m a rY

44%

6% 9% 6% 3%

3% 1%

19%

9%

EXPENSES - 2008

Grants Publications Advocacy Annual Meeting Membership Youth Programs Partnerships/NPN Administration Fund Raising

62%

2%

7%

13%

8%

4% 2%

0.84%

REVENUES - 2008

Grants Sponsorships Contributions Advertising Memberships Meeting Reg. Sales Interest

F i n a n C i a L r e P o rtTheAmputeeCoalitionofAmerica(ACA)isanonprofitorganizationestablishedasaneducationalresourcetopromoteamputeeawarenessandunderstandingthroughouttheUnitedStates.TheACA’sprimaryfundingsourcesarefederalgrants,memberships,publicationadvertising,sponsorships,anannualconferenceanddonorcontributions.

ThefinancialstatementsofACAhavebeenauditedbytheindependentauditfirmofCoulter&Justus,P.C.,andarepreparedinaccordancewithaccountingprinciplesgenerallyacceptedintheUnitedStatesofAmericausingtheaccrualbasisofaccounting.

s tat e m e n t o F F i n a n C i a L P o s i t i o n

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s tat e m e n t o F aC t i v i t i e s

41

s tat e m e n t o F F u n C t i o n a L e x P e n s e s

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National

Limb Loss

Info Center Advocacy Publications

Annual

Conference Membership

Youth

Programs

Other

Program

Services

Total

Program

Services

Management

and General Fundraising 2008 Totals 2007 Totals

Salaries 610,039$ 150,811$ 31,739$ 16,648$ 55,784$ 17,899$ 49,052$ 931,971$ 57,273$ 121,443$ 1,110,688$ 1,034,300$ Fringe benefits 230,622 57,013 11,999 6,293 21,089 6,767 18,544 352,326 21,652 45,911 419,889 416,080 Commissions - - 505 - - - - 505 - - 505 3,000 Communications 12,335 3,691 1,011 630 4,271 245 179 22,364 8,145 3,181 33,689 35,397 Contractual costs 141,496 5,992 22,798 28,066 1,755 3,315 61,334 264,756 244,566 70,731 580,053 512,588 Depreciation - - - - - - - - 9,289 - 9,289 7,205 Educational resources 17,705 - - - - - - 17,705 - - 17,705 20,970 Insurance - - - - - - - - 12,305 - 12,305 10,466 Minor capital costs 9,638 - - - - - - 9,638 6,426 - 16,064 16,584 Postage 51,914 2,050 60,626 1,074 7,416 674 48 123,803 1,870 5,258 130,931 143,842 Printing 35,151 5,076 66,006 11,725 3,400 864 2,745 124,967 - 8,523 133,490 186,052 Rent - 25,144 - - - - - 25,144 167,867 4,562 197,573 169,441 Repairs and maintenance - - - - - - - - 7,656 - 7,656 11,377 Supplies 43,843 4,426 692 1,164 2,549 1,441 922 55,038 4,926 8,077 68,040 165,024 Travel 94,949 14,607 - 106,733 1,536 77,348 3,128 298,301 24,987 7,955 331,244 398,705 Utilities - - - - - - - - 20,926 - 20,926 17,516 Other 5,481 25 - 3,366 - - - 8,873 4,004 5,078 17,955 58,560

TOTALS 1,253,175$ 268,835$ 195,375$ 175,699$ 97,800$ 108,555$ 135,952$ 2,235,390$ 591,892$ 280,719$ 3,108,001$ 3,207,107$

Program Services Supporting Services

Amputee Coalition of America

Statement of Functional Expenses

For the Year Ended December 31, 2008

(With Summarized Financial Information as of December 31, 2007)

sPeCiaL Friends oF the amPutee CoaLition oF ameriCa – 2008

$25,000 - $100,000OttoBockHealthCare,Inc.

$10,000 - $24,999OssurMarilynSimpsonCharitableTrustFund

$1,000 - $9,999ASPIREDrewShoeCorporationIBMCorporationNAAOPTheFrances&BenjaminBensonFoundation,Inc.ThePortmannFamilyCharitableFundWal-MartFoundationWilkersonM.HowardTrustArthurBassinMarshallCohen,Cohen&PerfettoLLPIrisDetter,TheDetterFamilyFoundationMeghanEilbeck,FreedomInnovations,Inc.DorothyForry,WaltersFoundationofMorristown,TNJosephKlest,LawOfficesofJosephG.KlestKeithKrakower,StorageDeluxeManagementCompany

KarlKuddes,SpringAmputee/AlliedHealthcareEveRachelMarkewich,MarkewichandRosenstockLLPJamesOrphanidesReddOwenBrettRobenhorst

$500 - $999AdvancedProstheticsCenter,LLCJeffreyCainGregCanaveroJoanneCasteelGeorgeCounts,C.H.MartinCompanyCarisaDeAndaCalvinErbTerryFeeney,MillenniumPartners,LPKarenFeinsteinFredricGould,GouldInvestors,LPJeffLewisD.R.B.LiddellJeanLynchRichardMyersJillParrCraigPratkaJoe&SuzanneQuintFeliciaRosenfeldSusanScherrPaul&AnneSmiy

KathySpozioAllanStarr,StarrAssociatesLLPDennisStricklandJordanThomasJohnVaccaIrving&ElaineWolbrom

$100 - $499AmputeesHelpingAmputeesAmputeesinMotionofSantaCruzCountyArtechLaboratory,Inc.ArthurFinniestonBiometrics,Inc.Brownfield’sProsthetic&OrthoticCalumetOrthopedicandProstheticCo.ChallengedAthletesFoundationCoastalBonding,Inc.CommunityDevelopmentServicesDynamicOrthotics&Prosthetics,LPFirstTennesseeBankFranklinWomen’sHealthAssociatesGladsteinDevelopmentGroup,LLCInnovativeSolutionsConsultingGroupJMWAArchitects

MauriceElectricalSupplyCo.McDonaldPropertiesLCMcKinneyProstheticsLLCPenn-Air&HydraulicsFoundationPremierProstheticsPrimeCareO&P,LLCProsperityNetwork,LLCProstheticCenterOfExcellenceSemlitzGlaserFoundationStatenIslandAmputeeClubSVISystems,Inc.SwanBoatClubAux.UniversalTrainingConcepts,Inc.BillyAaronRobertArbogastMattAustenJudithBallDavid&KathyBalzanoKarinBarkhornSteveBarootian,SEWisconsinHOG-RacineChapterLewinBarringerGeorgeBarton,LawOfficesofGeorgeA.Barton,PCGeorgeBatesRobinBergerMarjorieBermanDorothyBlackRayBlankenshipRobertBlissChristinaBlocker,BlockerEnterprises,Inc.

SylviaBlumeBruce&CindyBoydMaryBrodskyMatthewBrungerMichaelBuchananLanceBuhl,Buhl&AssociatesAlcideCadorKendraCalhounAlidaCanionTaniaCarsonSueCasteelDebbieCavins,ChillaComputer&InternetServiceMichaelCestaro,RehabilitationPractitioners,Inc.KimberlyChampionMichelleCheckPatChelf,OttoBockHealthCareVincentCinelliJohnClassStephenCobbBarbaraCohnJohnComstockJamesCooling,Cooling&HerbersBrandonCourtade,AdvancedP&OofAmericaMaryCoyStephenCraneMarylouCreelmanEmilyCutler

43

sPeCiaL Friends oF the amPutee CoaLition oF ameriCa – 2008

RonaldD’AlessandroFrankDamianoEdwardDavisErikaD’EgidioRuviDeGuzmanJohnDermodyKennyDixonJamesDohertyTedDrygas,CareCrafters,Inc.JohnFarleyTeresaFennerBrianFerrier,FerrierCoupler,Inc.DaleFesteRobertForbesRenaForestRichardFrieden,MountSinaiSchoolofMedicineKumikoFurukawaGlendaGabrielJeffGambelPhilipGardnerCharles&AnneGibbsFrancesGinsberg,TheGrubstakeFoundationTrustPaulaGolladayCynthiaGoodpastureMarkGoudeAlexGrassRosemarieGreeneJamesGreilsheimerEdwardGurkaJohnHalebian,Lovell,Stewart,Halebian,LLPPeterHamborg

SamHamontree,OrProProsthetics&OrthoticsBillHannaCecilHarpGwendolynHaywoodChristianHeckLeslieHenryRobertHenryHelonHewittHarlanHeydonTammieHigginbothamPolly-JoHightower,Alpert’sMedicalEquipmentJesseHillDevinHolidayJo-AnneHongoRuthHowardLawrenceHunsicker, UniversityofIowaCollegeofMedicinePatriciaIsenbergBarryJones,Brownfield’sProsthetic&OrthoticBenJonesRaymondKabalaNicoleKafkaSusanneKagami,Hawaii’sMusicLiveNathanielKarlinsRexKeelingEdwardKennedyBobKleinEvaKleinNicoleKleinSheilaKnopp

JeraldKornShirleyKornreichVictorKovnerCharlesKrauthamerDeLorisKriegerDavidKurzDeborahLazarusCharlaLillisFernandoLimonMichaelLombardoAndrewLourakeJoMacGibbonDonaldMacInnesWilliamMadlemPeter&BarbaraMarcyanIrisMarkewichThomasMazikMargaretMcCauslandSuzanMcDanielRobert&MayMcKoonRobertMegninSondraMeierBarbaraMendesMichaelMenzAdelMetryChristineMetschSusieMimsJeffMitznerDougMooreEdwardMoran,LawallProstheticsDonMorrisMichelleMullarkeyVianelloMiaeNapolitanoCharlieNeal

JeffreyNewmanJackNorrisRaymondNorris&DebbieBlair,SmallBusinessAccountingSolutionsPaulO’KeefeFlorenceO’SullivanJeremiahPerezLaurenPetersRuthPetzoldWilliamPinzlerWesPixlerThomasPopeRichardPotvinRobinPressman,RobinA.PressmanConsultingPeterPurdyMaryQuillSusanRatnerSallyRhoadsTylerRiberdySallyRitcheyStephenRizzoGrantRobbennoltKathleenRooneyArthurRosenfeldEdwardRosenthalPaddyRossbachDonRypmaPeteSamJoseSanchezJoanSangerCynthiaSaucedaRitaSchneider

EricSchneider,GraceChurchSchoolMarilySchonthalCarolSchoonover,OhioWillowWoodAlanSegetJoeSewterMelissaShawVirginiaShemeleyJackSickmanNicholasSieckoRobertSiffertHowardSilverWadeSkardoutosLyndaSmithMichaelJ.A.SmithRyanSoucyGregorySpozioDianeSteinbrinkMargieStewartRobertStrasslerAaronSuna,SunaBros,Inc.TimothySvobodaCathyTaborBahgatTaraziJamesTimmonsEmilyToddLuanneToepferBrandonTrippHollyTrippMattieTrupiaTracyUpdikeGeorgeUzymirskiLuciaVanderpoolGusVelez

44

sPeCiaL Friends oF the amPutee CoaLition oF ameriCa – 2008

BillWagesDeborahWalkerDawnWatkins,Barbera&Watkins,LLCRobWehrMaggieWert,SpectrumProsthetics&Orthotics,Inc.CharleneWhelanMarciaWilliamsTonyaWilsonAvraWingSandraWoodenJackWoodfordAlbertYoung,HealthCareServiceCorporation

$99 - BelowAbbottLaboratoriesEmployeeGivingAmputeesinMotionofToledoBerksCountyChapterAmputeeSupportTeamCenterforProstheticsOrthotics,Inc.CentralBrace&ProstheticsInc.ChesterCountyPrisonRecordsComprehensiveProstheticsDivisionofForestry,FriendsofThomasDaleCaseFloridaO&PServices,Inc.IdealRollingDoorService

OrganizationofCompetitiveBodybuildersSelfHelpAmputeeGroup,Inc.SynergyOrthoticsandProstheticsTri-CityAirConditioningUnderArmour,Inc.WellsFargoCommunitySupportCampaignJoanneAbrahamsBernardAbramowitzMark&VirginiaAbramsonMarthaAdamsStevenAdamsGeraldAdlerHossainAlaliJohnAlexanderMichaelAllen,AllenOrthotics&Prosthetics,Inc.KellyAnnAlsedekPaigeAnderholmCarolAndersonDale&CandyAndersonCharlesAndresenKellyAndrewsWilliamAnnechiniFranklinArthurMorrisArthurRobertAsburyVincentAttanasioPeterAugustineBertha&KarenAvilesGracieAyalaDavonniBaboolal

MargaretBaldwinKristinaBamvakaisJudyBangJudithBardwellMarthaBarkerTeressaBarkleyCharlieBarrettWilliamBarrettPatriciaBarryGaryBashianStuartBassYvonneBatsonMarcieBeckerSusanBeitlCarlBellRichardBelongiaKlaussBendlerBarbaraBergArleneBergerAllieBergeronJohnBerstPennyBeverLindaBiaginiMichaelBilinskiStellaBioBiffBirkenmayerPatriciaBlackmanMargaretBlaszakBarbaraBohlanderRobertBolingerMaryBoltonRobertBondJohnBookPamBornsMyriamBower

BarbaraBowersTylerBowmanJoanBradburyShirleyBramalgeRoslynBrantLindaBrayMichaelBreitenbachSethBreunigFrancineBrottmanLeroyBrownRobertBuck,EasternAmputeeGolfAssociationKevinBurrellPatriciaBurris-WoodallJim&DarleneCainSwingerCalhounJessieCampbellShariCaradonnaR.CarhartJenniferCarnellJamesCarrollKellyCasebereRichardCastroAlbertCeravoloRobertChavezJosephCheneyArthurChesleyKatyChristianJamesChurchAndrewClarkGeorgeClarkMikeClarkHelenClasenMarvinCohenShirleyCohen

BetteColburnAndrewColeJimmyCollinsKarenCondonMarjorieContosCharlesCookKenCookAntoinetteCornellCharlieCourserJolieCraftDonnaCrawfordRalphCrawfordJohnCriglerCharlesCrone,NascottRehabilitationServicesDianeCrossJacqueCrossHancock, RochesterOrthopedicLaboratoriesInc.AidanCrossenElizabethCrumVeronicaCulhaneJillanaCurryPeteCusackJeanetteCzyrnikDavid&KarenDackDonaldDaigleJohnDalyAdrienneDamicisGeraldDavidsonCharlesDavisDonaldDavisElizabethDavisJeffreyDawsonTrevorDay

45

MariaDeBenedictRichardDenglerWallaceDickhartPeteDigiacintoEstherDiMangoSunnyDiverAngelaDoehlertKimDoolanFayDornbushRobertDorseyBarbaraDreyerMarkDriscollP.FrederickDuckworthEdwinDyerJohnDziubanJacquelineEagleBetteEdelsteinCristinaEgbertCarolEisenVirginiaElderJohn&MichelleElevierAndrewEllicottAlvinEpsteinErda&BobErdosJeffErenstoneKatherineErfurtArlyneEttingerEllenEuclideWilliamFagleyCarolFergusEdwardFinchRobertFlaxmanBrendaFleckGeorgiaFoltz

SandyFoster,Children’sHospital,EastTNPatriciaFrankHelenFreedmanGeorgeFrenetteCraigFriedmanBeverlyFrielBarbaraFriendJosephFurnivalCharlesGargiuloRonGarlandDianaGarroneSigneGatesPeterGeffenDorisGeigerAnthonyGenisMaryGeorgeRonGerwollsFrankGiacomucciKellyGibbonsRobert&RosalyGibsonWilliamGillJames&SandraGillespieTomGiminoLindseyGirdenBeatriceGlassLaurieGlassAndorGlattsteinJohnGoddardKaraGoffMarkGoldbergEleanorGoldsteinAndrewGoldstoneDianneGoodrichJenniferGoodrich

MarilynGoodrowDavidGorkaJoeGormleyPaulGosiewskiPattiGrahamHermine&SteveGreenbaumJeriGrinaFrancisGrubaLarryGuagliardoJamesGurnKathleenGustafsonStaceyHaasJamesHackmanJohnHainesWorthHaithcockJoeHallPhilHallAdelineHallinanLyndaHamiltonMarkHamiltonBenHamptonJames&NanetteHannaAlanHaragelyMaryHardemanSchulze,BayArea’sBestEnterprisesConstanceHarpJohnHarrisJosephineHarrisAmyHarwoodSherylHavermannJohnHayesCraigHealyKennethHenryDorothyHigginsPhilHildebrandt

NancyHinkleDanHodessAnthonyHoffmanElizabethHoittAllenHoleJamesHolzbauerElizabethHooverJohnHorne,IndependenceProsthetics-Orthotics,IncJaneHortonWilliamHosslerNatalieHouselBillHowardJanetHudsonMahlonHuffEvelineHuntPatHunterRobertHurlbutHelenIgnaszewskiBarbaraImesJordenPaulIsingKent&CatherinJacksonBrandonJamisonLeonardJankowskiGeraldineJeffersonGigiJensenK.K.JensenP.V.JensenEdwardJevarjianDaveJohnsonDavidJohnsonDennisJohnsonKatrinaJohnsonKevinJohnsonLaverneJohnson

LibbyJohnsonMelanieJohnsonMichaelJohnsonWilliamJohnsonAlanJonesAlvinJonesRobinJonesSarahJonker-BurkeKimJordanLarryJordanDavidKanazawaStevenKasunichC.KatsamasJamesKayRobertKeaveneyJackieKelleyIdaKellyMarkKellyTanyaKieferMaryKingNancyKinneyCharlesKirchnerLeonKittlesBarbaraKleinKristineKnottsPhyllisKolanPennyKorporalMarkKoslenLorriKovitzReginaKowalSharonKramerWilliam&JulieKruseMichaelLaBelleMadelynLadnerSusieLafler

sPeCiaL Friends oF the amPutee CoaLition oF ameriCa – 2008

46

DonLansperyRichardLarsonAnnLasnickLindaLavelleHowardLazarScottLeakeRaymondLeasureJohnLeBlancDonLeeLaurenLeeberKristiLengyelMarleneLentzKennethLeonardGiovanniLeviNormanLevinBobLevineEllenLevineRobertLevinsohnMurrayLevyNancyLewisWilliamLewisL.J.&E.K.LiebmannEdwardLindSusanLintonJohn&GinnyLionNancyListerLynneLittleDarryllLivermoreYvonneLlanesJack&LisaLloydGinaLobacoMaryLopataJohnnyLovingRaviLumpkin,Lisa’sCreativeAlternatives,Inc

Bob&PhyllisLyonJanetMaggardJosephMajerleAntonMalensekRoseMaloneyRogerManningJohnMansfieldBobMansonCrestinaMarezDarrylMarlerBillyMarshaGeorgeMarthalerJasonMartinsonKarinMartzWildaMathiasHarryMatneyDonnaMatthysCharlesMayoneMortonMazerJacquelineMazowayDonMcAberyCarolMcCann-KojimaCharlotteMcCormickNancyMcCoyHarryMcCuskerPeterMcGregorFairleyMcinnisDonaldMcKenzieScottMcNuttJoanMcSherryFastagMeilechEdwardMelendezAciscloMelendezPatriciaMelgarJosephMellon

ErichMengerKimMentzerBradMetzgerRichardMiddletonRodneyMillerHarrisMillerConnieMiller,VocationalRehabilitationMollyMooreJulieMorinLillianMortsTinaMottoHallerMoyersCarolynMulrooneyJudeMurphyBarbaraMyreLisaMyrickRosemaryNachtweyDianaNaftalMelinaNakosLisaNamiPeggyNanceNicolasaNavarreteDakotaNealAmandaNelsonJimNicholsonDavidNickersonBillNiewoldEricNilssonThomasNollEmilyNymanJimmyObermierRichardO’BrienJosephO’HareElvinOlsen

RalphOlsenMichaelOlsonMaryO’NeillLesOpatMarleneOramJudithOreski,MedianSchoolOfAlliedHealthRonaldOserAmaliaO’TooleDavidOuseyDannyPachecoKathyPaige-JonesSandraParkashMaryParnellRobertParrKathrynPascarellaJenniferPattersonMikePaullBillMorgan&PegMaherJohnPellettiAnnePelosofAllenPetersWilliamPetersBenPetersonLouPetrellaEdwardPetroskyDennisPhelpsBillPhillipsEvaPiattJeff&EllenPiercePaulPolifronioDianePollockThomasPorterFayPotteigerMichaelPouba

SheilaPoutsiakaDebbie&RobertPressGerhardProskeMildredPuckettMildredPughAmyPurdyPhillipPusateriDannaPykePatriciaQueenFrederickRandjbar,LICProstheticsandOrthoticsMarioRandleKermitRappCatherineRaspetMinnieRedenbaughMarkReedNinaReedJosephReillyPaulReinhardCaridadRemandoJudithResnickSeanReynoldsCharlesRhoadesM.JoanRiceRobertRiceWilliamRinckPatriciaRittenhouseAnitaRivardJerryRoberts-ThomasJosephRoccoPamRodgersMichaelineRojekLesaRolfeBarbaraRomineAlvinRosenker

sPeCiaL Friends oF the amPutee CoaLition oF ameriCa – 2008

47

SidneyRosoffNathanRoth,SanFranciscoCosmeticDentalGroupStephenRothDavidRotmanJackRussellAngeliaRyanEugeneSakataStanleySaleskiCesarSanchezCarlosSatizabalPokSawtelleRichardSaylorCharlesScaffidiNeilSchefflerMiltonSchlossScottSchmidtEllenSchneiderMartinSchneiderStuartSchofieldMikeSchueAllanSchulze,AllanArtificialLimbsConnieScottLauraScudderSusanSefanskyKyleSeufertEddSewell

SusanSeybertGeorgeannShawAntoinetteShayewJoeSheaBobSheedyKatieSheehanRichardShelleyDon&KarenShultzJohnShuteDonnaSiebersBryanSiegelmanDonnaSiglerMicheleSkocypecJohnSlawskiCarolynSlaybaughMichaelSmithTerrySmithBrendaSmiyJaniceSniderJulieSoaresJeffSobelTimothySpencerBeckySpivackBernardSpozioNancyStaffordJohnStandifordKyleStephensAaronStisser

EdithStorGreggStoufDeanStraffinFritzStunkardBettySuberWillSundberg,AlchemyOrthotics&ProstheticsSamSvobodaDarenSweeneyConnieTaylorGeraldTegardenDavidTeranCadyTescherKlausThoerichtRogerThomasWayneThomasKellyTimkoKennyTinsleySusanTiptonMaryTobinRexTomlinsonWilfredToneyEugeneToniDominicTorresBethTraskTimTraversHeatherTufanoAnnTuton

PegTwitchellJerryUlaneWallyVahlstromJohnVaillancourtCarleneVanDyckRichardVasgaardJuliannaVaughanDavidVeitMirlaVissingEricVolpeBettyWagemanCarolynWahausDennis&AbbyWaldmanAmandaWalkerRichardWalkerStanWallRobertWallachThomasWalsh,AbilitiesinMotionTomWaltersJoanWanamakerJeffreyWarnickeNancyWatkinsMarthaWebbRonWebberWilliamWeberSallyWeeksJoannWeigang

WilliamWelshJohnWentzelRobertaWernerNatalieWhiteBeckyWhitmoreErikaWilliamsEvelynWilliamsMaryWilliamClydeWilsonKatharineWilsonConroyCarlaWingfieldKevinWixomStanWlodarczyk,TheProsthetic&OrthoticCareCompanySyWohlLouisWolfPamWolfeJustinWorthingtonChristineYiDameronMichaelYingerLynnYostArtYoumansNeilYoungLouisZafonteKambizAliZangeneh

48

sPeCiaL Friends oF the amPutee CoaLition oF ameriCa – 2008

amPutee CoaLition oF ameriCa CorPorate sPonsors – 2008

Gold LevelOssurOttoBockHealthCare

Silver LevelOhioWillowWood

Bronze LevelBenchmarkOrthotics&Prosthetics

Patron LevelPurduePharma,LP

David McGill, ChairVicePresidentLegalAffairsOssurAmericasAlisoViejo,CA

Eve Rachel Markewich, Esq., Vice Chair MarkewichandRosenstockLLPNewYork,NY

Arthur Bassin, TreasurerDirectorCricketHillFarm,Inc.Ancramdale,NY

Board of Directors

Medical Advisory Committee (MAC)

Kathleen K. Spozio, SecretaryRetiredAdministratorClarionUniversityofPA,OfficeofSocialEqualityandADACoordinatorShippenville,PA

Jeffrey Cain, MDChiefofFamilyMedicineTheChildren’sHospitalDenver,CO

Patrick ChelfVicePresidentofMarketingandBusinessDevelopment,OttoBockMinneapolis,MN

Marshall J. CohenPartner,Cohen&PerfettoLLPNewYork,NY

Jeffrey S. Lutz, CPORegionalVicePresidentandMarketLeaderHangerProstheticsandOrthoticsLafayette,LA

Richard N. Myers, Jr.PresidentandCEOTheNormanBlairGroupLaderaRanch,CA

Charles E. SteeleRetiredIBMExecutiveNewYork,NY

Terrence P. Sheehan, MD, MAC Chair and ACA Medical DirectorAdventistRehabHospitalofMarylandRockville,MD

Douglas G. Smith, MD, Emeritus Member ACA Medical Director(untilMay2008)HarborviewMedicalCenterSeattle,WA

Jeffrey Gambel, MDWalterReedArmyMedicalCenterOrthopedicSurgeryandRehabWashington,D.C.

Nancy Payne, MSN, RNLimbLossClinicalNurseSpecialistDukeUniversityMedicalCenter(DUMC)Durham,NC

Christina Skoski, MDHuntingtonBeach,CA

Robert N. Brown, Jr., MS, CPO, FAAOPStrongOrthotics&ProstheticsRochester,NY

Jeffrey Cain, MDTheChildren’sHospitalofDenverDenver,CO

Charles E. SteelePatientMemberNewYork,NY

Stephen T. Wegener, PhD, ABPPAssociateProfessorandDirectorofRehabilitationPsychologyJohnsHopkinsUniversityBaltimore,MD

Natalie Fish, PTLindsayRehabilitationHospitalMontreal,Canada

Robert Gailey, PhD, PTUniversityofMiamiMiami,FL

Paddy Rossbach, RNPresident & CEOAmputeeCoalitionofAmerica(untilSeptember2008)Knoxville,TN

Kendra CalhounPresident & CEO(asofSeptember2008)AmputeeCoalitionofAmericaKnoxville,TN

Patricia Isenberg, MSCOOAmputeeCoalitionofAmericaKnoxville,TN

Charlene Whelan, LCSW, MBAHealthEducatorAmputeeCoalitionofAmericaKnoxville,TN

Paddy Rossbach, President & CE0(until September 2008)

Kendra Calhoun,President & CEO(as of September 2008)

Patricia Isenberg, COO

a m P u t e e C o a L i t i o n o F a m e r i C a L e a d e r s h i P

49

Region A – Upper Northeast (ME, NH, VT, MA, CT, RI)JohnVaccaPoughkeepsie,NYRegion B – Central Northeast (NY, PA, NJ, DE)CharlieSteeleNewYork,NY

Region C – Central East (DC, MD, OH, VA, WV) RichardFriendCincinnati,OH

Region D – Central Midwest(IL, IN, MI, MN, WI)TammieHigginbothamBath,IL

Region E – Atlantic Southeast (NC, SC, GA, FL)StellaSieberDurham,NC

Region F – Southeast (TN, KY, AL, MS)SherriSamuelsMemphis,TN

Region G – Midwest (IA, KS, MO, ND, SD, NE)MaxineLeslineLogan,IA

Region I – Central Southwest (AR, LA, OK, TX)MonaPatelSanAntonio,TX

50

a m P u t e e C o a L i t i o n o F a m e r i C a r e g i o n a L r e P r e s e n tat i v e s

Region A

Region B

Region C

Region D

Region E

Region F

Region G

Region I

Region J

Region J – Rocky Mountain (AZ, CO, NM, UT, WY)RyanLeishmanNibley,UT

sPeCiaL thanks to the aCa’s dediCated voLunteers and staFF

“Nothing great in the world has been accomplished without passion.” – Georg Wilhelm Friedrich Hegel

C h a n g i n g L i v e s Through Passion

“Paddy contributed significantly to the growth, success and recognition that have the ACA considered the premier and authoritative support organization for people with limb loss in the U.S. and the world.” – Charlie Steele

“What a great find and huge asset Paddy has been to the ACA.

Her legacy and the mark she left will never be erased or forgotten.”

– Charlie Steele, ACA Board of Directors

BorninEnglandinthedaysleadinguptoWorldWarII,Patricia“Paddy”Rossbachlostherlowerleftlegwhenshewas6afterbeingstruckbyamilitarytruck.ButsetbacksseemtobewhatRossbachwasborntoovercome.Shelearnedtotakecareofherself,wentofftoprivateschool,becamearegisterednurse,begancounselingyoungamputeesonherown,beganskiinginher20s,scuba-divinginher30s,runningmarathonsinher40s,andridingindressagecompetitionsinher50s.Inthe1990s,atatimeinlifewhenmostpeoplewouldbelookingforwardtoawell-deservedretirement,RossbachencounteredtheAmputeeCoalitionofAmerica–andsoonbroughtherformidableenergyandindomitablespirittoserveit.

Enduring Legacy: Paddy Rossbach, ACA President & CEO, 2002-2008

52

Sheservedontheorganization’sboardofdirectorsandasitschairinthelate’90s,acceptedthepositionofinterimCEOin2001,andwasnamedpresident&CEOin2002.SheretiredinSeptember2008.

Whenspeakingofachievementsduringhertenure,Rossbachembodiesthespiritof“teamfirst”thatissoessentialtotheworktheAmputeeCoalitiondoes.

“Imustprefacethisbysayingthatnoneofthingsthathappenedduringmytenurewouldhavebeenpossiblewithouttheadmirablestaffwehad,”shesays.“Noonecandoitalone.Itwouldn’tberighttosay‘Ididthis’or‘Ididthat’–Wedidit.”

JustafewofthethingswedidwithRossbach’sassistanceorleadershipinclude:•Beginningandpromotingtheprostheticinsurance paritycampaign,whichhasspreadbothnationwide anduptothefederallawmakinglevel•EstablishingandgrowingtheannualAmputee CoalitionYouthCamp•Standardizingpeervisitortrainingandexpanding theNationalPeerNetwork•ForgingtieswiththeDepartmentofDefense andassistingtheDoDindevelopingitsown peertraining•Fosteringandenhancingcommunicationand cooperationamongprofessionalorganizations thatservethelimb-losscommunity.

Ofthislastpoint,Rossbachsaysitwas“somethingthatpleasedmeverymuchduringmytenure,bringingtogethermorecloselytheprofessionalorganizationsthatalsoworkwithpeoplewithlimblossandbringingthemclosertotheACAsothatnowAOPAandallthoseorganizationsareworkingtogethermuchmorecloselywiththeACA.Ithink,becauseofthat,itgiveseveryonegreaterstrength,especiallywithparity.”

“TotrytopickjustthehighlightsofPaddy’sachievementsattheACAisanimpossibletask,”saidPatIsenberg,whobecametheACA’schiefoperatingofficerduringRossbach’stenureaspresident&CEO.“Her‘people-person’personality,herdriveforexcellence,andherenthusiasmforhelpingpeoplewithlimblossinspiredallofuswhoworkedwithhertomakeeachfacetoftheACAorganizationthebestitcouldpossiblybe.AlthoughshemayhaveretiredfromherpositionswiththeACA,sheisneverfarfromourhearts,andherpassionforhelpingcontinuestoinspireus.”

Enthusiasm,peopleskills,drive,spirit,determina-tion–manytermshavebeenusedtodescribethemostsingularqualitythatRossbachbroughttotheAmputeeCoalition.ForboardmemberMarshallCohen,thewordtodescribewhatRossbachbroughttotheACAis“passion.”

“Her vision, passion, knowledge, personal

experience and professional training

brought a huge stamp of credibility to the ACA

and those who chose to work with us and fund our initiatives.”

– Charlie Steele

53

54

“ThedefiningcharacteristicofPaddyRossbachisherpassionforwhatevershetouches,beitprogrammingforchildrenwithlimblossanddifference,peervisitationorhorses,”saysCohen.“Herpassionwasandisinfectious,inspiringherchildren,herpeersandotherstogivetheirbestefforttowhateverprogramisathand.Ipersonallyexperiencedherimpactwhenshereachedouttomeinapeervisitbeforemyamputationtoexplorethisdifficultchoice.Shewassensitive,clear-headedandinspiring,guidingmetomaketherightdecisionformyself.”

AnotheraspectofRossbach’stenureistheexpan-sionoftheACA’scoreservicesandstrengtheningoftiestotheCentersforDiseaseControlandPrevention,whichhelpsfundservicessuchastheACA’sNationalLimbLossInformationCenter,whichsawitsusagemorethandoublefrom2002to2008.Withtheexpansionofitsservices,theACA’srecognitionhasgrownaswell,andpartof

thatisduetoRossbach’sassociationwiththeACA.Rossbachhasalsobeenhonoredbynumerousotherorganizations,includingtheAmericanOrthotic&ProstheticAssociation(AOPA)andHanger,forhereffortsonbehalfofpeoplewithlimbloss.

“Paddycontributedsignificantlytothegrowth,successandrecognitionthathavetheACAconsideredthepremierandauthoritativesupportorganizationforpeoplewithlimblossintheU.S.andtheworld,”saysACAboardmemberCharlieSteele.“Hervision,passion,knowledge,personalexperienceandprofessionaltrainingbroughtahugestampofcredibilitytotheACAandthosewhochosetoworkwithusandfundourinitiatives.”

“TheACAowesPaddyRossbachatremendousdebtofgratitudeforherleadershipandyearsofservice,”saysKendraCalhoun,whotookoverfromRossbachasACApresident&CEOinSeptember2008.

In 2009, the Amputee Coalition Youth Camp was renamed in Paddy’s honor to the Amputee Coalition of America’s Paddy Rossbach Youth Camp.

“Paddy helped establish a solid foundation of core strengths from which we can grow as an organization to develop more areas of expertise to serve the limb loss community in ever-expanding ways. Paddy positioned the ACA well to move forward, and I am proud that the ACA can move into the

future working from the solid base that she helped us achieve.” – Kendra Calhoun, ACA President & CEO

Note: No funding from the Centers for Disease Control and Prevention (CDC) is used to support ACA advocacy efforts.

a n n u a L g i v i n g d o n o r F o r m

Name(s)___________________________________________________

Yourfullname(s)exactlyasit(they)shouldappearondonorlists

oCheckhereifyoudonotwishyourgifttoberecognizedinourAnnual

Report.

Address___________________________________________________

City________________________ State________ZipCode________

Telephone(Home)_____________ (Other)______________________

E-Mail____________________________________________________

PAYMENT OPTIONS:Iunderstandthatthisdonationisnotforrenewalofmy

currentmembership.

oCheck$__________payabletotheAmputeeCoalitionofAmerica

oCharge$__________tomy/our:

oVisaoMasterCardoAmericanExpress

Card#_________________________________Exp.Date__________

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Signature:_________________________________________________

I DESIGNATE MY GIFT TO:oUnrestricted

oYouthCamp

oAdvocacyEfforts

oNationalPeerNetwork

oMilitaryPeerVisitation

TO HELP OUR BOARD OF DIRECTORS PREPARE FOR THE FUTURE, BE ADVISED THAT:oIhavealreadyincludedtheAmputeeCoalitioninmyestateplans.

oIwouldlikeinformationaboutwillsandotherplannedgiving

opportunities.

PLEASE MAIL THIS FORM TO: KendraCalhoun,President&CEO

AmputeeCoalitionofAmerica

900E.HillAvenue,Suite205

Knoxville,TN37915-2566

Orfaxitto:865/525-7917

OrvisittheACAWebsiteatamputee-coalition.org/giving/donate_now.html

togiveonline.

THANK YOU! Aformalgiftacknowledgmentletterwillbemailedtoyou.Contributions

inresponsetotheAnnualGivingappealaretax-deductibletothefullest

extentallowedbylaw,inasmuchasnogoodsorservicesareprovidedto

donorsinexchangefortheirgifts.

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900EastHillAvenue,Suite205•Knoxville,Tennessee37915-2566•888/267-5669•www.amputee-coalition.org

“How wonderful it is that nobody need wait a single moment before starting to improve the world.”

– Anne Frank