HearttoHeartchildrenscardiomyopathy.org/downloadable_files/... · CCF UPDATES CCFBoardmembers,...

HearttoHeart

The Children’sCardiomyopathy Foundation (CCF)is pleased to support the promising researchof Charles Murry, M.D., Ph.D., director ofthe Center for Cardiovascular Biologyand professor of pathology and bioengi-neering at the University ofWashington.As CCF’s 2009 research grant recipient,Dr. Murry will focus his research onderiving cardiovascular cells (cardiomy-ocytes) from pediatric cardiomyopathypatients to shed light on the diseasemechanism and possibly establish newcardiac repair therapies.

The grant aims to grow heart muscleand vascular cells from stem cells madefrom readily available human skin cells.

Highlights...

Volume 6, Number 1 • Spring • Summer 2009

2009 CCFGRANT RECIPIENT SELECTED

for PROMISING STEM CELLTHERAPY As the skin cells will come from the patients

themselves and not from embryonic stemcells, the newly generated cells will begenetically identical. This novel approachwill circumvent the ethical controversy and

possible immunerejection associatedwith using embryonicstem cells for therapy.

“Pediatric cardio-myopathy, by virtueof being geneticallybased, is an idealdisease to studyusing patient-derivedinduced pluripotentstem cells,” Dr. Murry

continued, page 10

RESEARCH BRIEFINGS

• CCF Announces 2009 GrantRecipient ........................pg. 1

• CCF-Funded InvestigatorPublished in HumanMolecular Genetics ........pg. 3

CCF UPDATES

• Medtronic Global HeroesSelect CCF AsBeneficiary ....................pg. 4

• First Annual PokerEvent Raises Over$124,000 ........................pg. 5

• Spotlight on CCF FamilyFundraisers ....................pg. 6

• Support GroupUpdates ..........................pg. 6

GENERAL NEWS

• National Sudden CardiacArrest Awareness MonthDeclared ........................pg. 8

• Potential Gene Therapyfor Advanced HeartFailure ............................pg. 8

FOR FAMILIES

• Expert Q&A: Maintaininga Marriage ThroughDifficult Times ..............pg. 9

• A Parent’s Perspective: JackieTillman’s Story............pg. 10

• Updates on CCF MemberListserv ............................back

continued, page 3

On December 8, 2008, People magazinefeatured Chicago Bears cornerbackCharles Tillman, but the coverage wasn’tabout his sensational tackles and intercep-tions on the field, it was about his youngdaughter’s fierce fight against cardiomyopathy.

On May 17, Charles Tillman was lookingforward to flying back to Chicago with hisfamily for the start of the Chicago Bearsorganized team activity (OTA) workouts.Tiana, his three-month-old daughter, camedown with what was thought to be a cold.Three days later, Tiana was airlifted toChildren’s MemorialHospital in Chicago.Her heart was failing.

Charles Murry, M.D., Ph.D.

TheLITTLE HEARTTHAT COULD:

TheTIANATILLMAN Story

2009 CCFGRANT RECIPIENT SELECTED

PROMISING STEM CELLTHERAPY

TheLITTLE HEARTTHAT COULD:

Talya and Tiana Tillman

HearttoHeartVOLUME 6, NUMBER 1 • SPRING • SUMMER 2009

The Heart to Heart newsletter is publishedbiannually by the Children’s CardiomyopathyFoundation (CCF), a national organizationdedicated to saving lives and improving thequality of life for children with cardiomyopathy.CCF’s mission is to accelerate the search fora cure by supporting research, educatingphysicians and patients, and increasing aware-ness and advocacy related to the needs ofaffected children and their families. CCF is apublicly supported tax-exempt organizationas described under section 501(c)(3) of theInternal Revenue Service.

Board of Directors

Lisa Yue, President & FounderBrian Nold, TreasurerRaymondYue, Secretary

Carney HawksIan SandlerEddie Yu

Medical Advisory Board

Wendy Chung, MD, PhDColumbia University Medical Center

Steve Colan, MDChildren’s Hospital Boston

Daphne Hsu, MDChildren's Hospital at Montefiore

Steve Lipshultz, MDUniversity of Miami Medical Center

Jeff Towbin, MDCincinnati Children’s Hospital

Staff

Sheila Gibbons, Development &Communications Senior Manager

Kella Boyer, Patient Outreach & Support ManagerHarriet Salk, Patient Support CoordinatorRenee Thekkekara, Project CoordinatorBecky Delgado, Administrative Assistant

All submissions and correspondence regarding thenewsletter or Foundation should be directed to:

Children’s Cardiomyopathy FoundationP.O. Box 547

Tenafly, NJ 07670Tel: 866.808.CUREFax: 201.227.7016

[email protected]

The Children’s Cardiomyopathy Foundation, including allparties to or associated with Heart to Heart will not beheld responsible for any actions readers take based on theirinterpretation of articles from this newsletter. As always,readers are encouraged to discuss medical evaluations andtreatments with their own physicians.

© Copyright 2009 Children’s Cardiomyopathy Foundation.All rights reserved.

2 Heart toHeart Spring•Summer 2009

From LisaYue,CCF Founder & President

Since CCF was founded seven years ago, it has grown into a global communityof families all touched by cardiomyopathy. Over the years I have been struckby the incredible people within our community all motivated by the samemission to finding a cure. These CCF families, from across the globe whogive their time and talents, come from all different backgrounds becausecardiomyopathy knows no boundaries.

This issue shares the stories of families making a difference: families whoorganize fundraisers, create DVDs to raise awareness, and form supportgroups. We also have a special interview with Charles and Jackie Tillman.Charles is a cornerback for the Chicago Bears, and he, his wife and twodaughters were living a dream before their lives changed forever.

These stories are our story, our collective cardiomyopathy story, whichshares the heartache and hope felt after a cardiomyopathy diagnosis. As Ihear from and speak to more parents, I am finding we need more ways tocommunicate and come together as a community. With this in mind, it ismy vision to enhance our website in the coming months to make it a trulyinteractive community where families can upload photos and stories,exchange information and tips, and have quick access to support.

Now seven years strong, CCF continues to grow and help families aroundthe world. It’s been rewarding to be a part of this global CCF community,and I’m grateful for the inspiration and dedication of those who havesupported CCF in their own unique way over the years.

CCF SpringAppeal:

An immeasurable source of strength, the CCF community providescomfort, support and guidance to families living with this disease.We are one community, working hand-in-hand searching for a cure.

Watch for our spring appeal mailing. We need your support to continueour work on behalf of all families affected by pediatric cardiomyopathy.

A donation and company matching gift also can be made using the enclosed envelope oronline at www.childrenscardiomyopathy.org.

We areOne Family,One Community.

explains. “We should be able to makecardiac muscle tissue that is geneticallyidentical to the patient and then usethis to better understand the basis forcardiac dysfunction and how to establishnovel treatments.”

Dr. Murry will use skin cells from geneticallyhealthy pediatric patients to test thisaproach. He will inject four genes intofully-developed skin cells and then “re-settheir clocks” to the embryonic stage, creating

induced pluripotent stem (iPS) cells. TheiPS cells will be directed to differentiate intocardiac and vascular cells using protocolspreviously established in the Murry lab. Thedifferentiated cells will then be combinedto create three-dimensional cardiac tissuewith an organized blood network systemresembling human heart tissue.

Dr. Murry hopes to use skin cells ofpediatric cardiomyopathy patients fromSeattle Children’s Hospital. By forming 3-Dcardiac tissue from the iPS cells of thesepatients, he can gain a better understandingof cardiomyopathy physiology, screen newdrugs for its treatment, and potentially usethe cells for heart repair.

With the extensive research he hascompleted on adult cardiac patients, Dr.Murry believes that lessons learned fromthe adult heart will translate readily to hisproposed research application and will pavethe way for future pediatric therapies.

Spring•Summer 2009 Heart toHeart 3

CCF Grant Recipient Selected for Stem CellTherapycontinued from page 1

RESEARCH BRIEFINGS

CCF-FUNDEDINVESTIGATORPublished in Human Molecular Genetics

Dr. Murry will focus his researchon deriving cardiovascular cells(cardiomyocytes) from pediatriccardiomyopathy patients to shedlight on the disease mechanism

and possibly establish new cardiacrepair therapies.

CLINICIANS & SCIENTISTS

Request for Research Applicationson Pediatric Cardiomyopathy

(Dilated, Hypertrophic, Restrictive, Left VentricularNon-Compaction or Arrhythmogenic Right

Ventricular Cardiomyopathy)

Description of Opportunity:The Children’s Cardiomyopathy Foundation(CCF) is inviting investigator-initiated researchapplications for innovative basic, clinical, popula-tion, or translational studies relevant to thecause, diagnosis or treatment of cardiomyopathy inchildren under the age of 18 years. Funding isavailable in the range of US$25,000 to US$50,000for one year of total direct costs.

Eligibility Requirements:The principal investigator must hold an M.D., Ph.D.or equivalent degree and reside in the UnitedStates or Canada. The investigator must have afaculty appointment at an accredited U.S. orCanadian institution and have the proven ability topursue independent research as evidenced byoriginal research in peer-reviewed journals.

Application Deadline:Grant guidelines and application form are availableonline at www.childrenscardiomyopathy.org/site/grants.php. The deadline for grant submissions isSeptember 4, 2009 with final award decisionsmade by January 2010.

For more information, contactLisa Yue, CCF President at866-808-2873, ext 901 or

[email protected]

The findings in the article, “Cardiac-Specific Ablation of Cypher Leads to aSevere Form of Dilated Cardiomyopathywith Premature Death,” conclude thatthe Cypher protein plays a pivotal role inmaintaining cardiac structure and cardiacfunction in mouse research models. Inhis study Dr. Chen shows that the removalof the Cypher protein from the heartresults in dilated cardiomyopathy withpremature death and suggests that specificbiochemical signaling pathways working inconjunction with mutations in the Cypher

protein causes heart failure.

Dr. Chen was awarded seed funding byCCF for his research,“Involvement ofCypher Specific Isoforms in DilatedCardiomyopathy.” Findings from thispreliminary study helped Dr. Chen securea five-year grant from the National Heart,Lung and Blood Institute in 2006. In thefollowing year, Dr. Chen published hisresearch results in two scientific journals,Progress in Pediatric Cardiology and Trendsin Cardiovascular Medicine.

CCF-awarded investigator, Ju Chen, Ph.D., of the University ofCalifornia at San Diego published his latest research findings in theNovember 21, 2008 edition of Human Molecular Genetics. Thisis the third publication that has resulted from his study, which wasfunded by CCF in 2005.

New HCM GENETICTESTINGAvailable

PGxHealth, a full-service CLIA laboratory,has been offering genetic testing forhypertrophic cardiomyopathy (HCM)since July 2008. It joins Correlagen,GeneDx and the Harvard-PartnersLaboratory as providers of genetic testingservices for cardiomyopathy. PGxHealth’sHCM panel screens for nine sarcomericgenes; MYH7, MYBPC3,TNNT2,TNNC1,MYL2, MYL3, ACTC,TNNI3,TPM1 plusthree lysosomal storage disorder genes;GLA (Fabry Disease), LAMP2 (DanonDisease), and PRKAG2 (Wolf-Parkinson-White-Syndrome).

PGxHealth offers a comprehensivereimbursement process with major healthinsurers including Medicare and Medicaid.For more information, please visitPGxHealth’s website (www.pgxhealth.com).


Tucker Davis, son of CCF parents Davidand Carol Davis, was inspired by hisyoungest brother Nathan’s struggle withcardiomyopathy. “As I’ve grown, I havebecome more aware of the seriousnessof Nathan’s heart disease,” says Tucker.“I wanted to do something to help peopleunderstand that even though he’s nolonger in the hospital and looks like he isfine, there are still serious issues that hehas to deal with every day.” Tucker, ahigh school junior from Clinton, Okla.,has presented his DVD to his schooland local civic clubs.

Misty McGatha’s life changed forever theday her daughter, Sandee, was diagnosedwith dilated cardiomyopathy at 13months. “We were told she would notleave the hospital without a new heart,”says Misty of Van Buren Ark. “That wassix-and-a-half years ago and today sheis off all medications and is very activein softball & gymnastics…with her ownheart!” To mark her daughter’s fifth yearof living with cardiomyopathy, Mistycreated a slideshow featuring many ofthe families she has come to knowthrough CCF’s listserv.

Joshua and Heather Tucker developedtheir slideshow to present at a fundraiserluncheon at Joshua’s employer,WorldWide Group in Spokane,Wash. The

video shares the story of how CCF wasestablished as well as the story of theirdaughter, Evangeline, who was diagnosedwith dilated cardiomyopathy at 3 monthsold. “The video really touched people,”says Heather. “There wasn’t a dry eyein the house.”

The families believe their hard workwill shed light on the trials and triumphsof CCF families living with the disease.Copies of Tucker Davis’ DVD are availableupon request through CCF. The Tucker’svideo is posted on www.youtube.com(search Children’s CardiomyopathyFoundation) and Misty McGatha’sDVD is viewable from CCF’s website(www.childrenscardiomyopathy.org/site/slideshow.php).

CCF UPDATES

Three motivated CCF family members, Tucker Davis, Misty McGathaand Heather Tucker, have tapped into their creative energies tocreate inspiring DVDs to share with others the stories of their lovedones living with pediatric cardiomyopathy. The slideshows not onlycommunicate facts, but also put a face to the disease in a memorableand comprehensible way, featuring pictures of families and childrenwho live with the disease and informative text about pediatriccardiomyopathy and CCF’s work.

Medtronic GlobalHeroes Selects

CCF as BeneficiaryThe Medtronic Foundationdonated $4,000 to the Children’sCardiomyopathy Foundation onbehalf of Medtronic GlobalHeroes Tracie Happel, ShannonPolkinghorn, Katherine Thomasand Mark Carbonetta. TheMedtronic Global Heroes programchooses 25 runners from aroundthe world whose lives have beenimproved by the help of medicaltechnology and pays for them totravel to and participate in theMedtronic Twin Cities Marathonin Minneapolis, Minn. As part ofthe program, Medtronic donates$1,000 to the nonprofit patientorganization each runner selects.CCF was chosen by all fourMedtronic runners, making it themost popular beneficiary organiza-tion of the races.

Tracie Happel and ShannonPolkinghorn have pacemakers,Katherine Thomas has an IntrathecalBaclofen therapy pump, and MarkCark Carbonetta has an implantedcardioverter defibrillator (ICD).With the assistance of their medicaldevices and motivated by theirfighting spirits, these four runners“continue to live our running andracing dreams despite a heartcondition,” said Tracie Happel.

CCF Family MembersCREATE DVDS on

PEDIATRICCARDIOMYOPATHY

CREATE DVDSPEDIATRIC

CARDIOMYOPATHY


CCF hosted its first charity poker event,All-In For A Cure No-Limit Texas Hold‘Em Tournament, February 11, at Stratain NewYork City. With more than 160attendees and 17 sponsors—includingImperial Capital, InTrade Group, BrigadeCapital Management, Katten MuchinRosenman, Richards Kibbe & Orbe,Kramer Levin Naftalis & Frankel, RBSGreenwich Capital and TD Securities—the event was a great success, raisingmore than $124,000.

“I was excited to see somany poker players show upto help raise money for thethousands of children affectedby this terrible disease,” saidCarney Hawks, CCF boardmember. “In these challengingeconomic times, we are trulythankful for the support ofour sponsors and individual

participants who made the eventsuch a success.”

Everyone enjoyed an evening ofcocktails, delectable food and pokerplaying. The night’s grand prizewinner was Jason Alpin of ImperialCapital, who won a $10,000 entryto the 2009 World Series of PokerMain Event in Las Vegas. Secondprize, an all-inclusive trip for two toLas Vegas, went to Marc Schwartzof Taconic Capital Advisors. MaggieDowd of UBS won the third prize ofan Atlantic City get-away at Harrah’s

Resort. Fourth prize, golf and lunch atHudson National Golf Club, went toMark Frank from InTrade Group. Fifthprize, tickets to a NY Giants game, wentto Ben Brogadir. Sixth through tenthprize winners of $75 gift certificates toModell’s Sporting Goods were ZachRoth, Andrew Susser, Chris Savinelli,Dennis Witte and Beau Harbour.First through fourth prize winners alsoreceived membership packages to theonline poker site SpadeClub.com.

CCF UPDATES

CCF Board members,Eddie Yu, Ian Sandler,Carney Hawks &attendee Al Piper

SAVETHE DATE!

Montclair Golf ClubWest Orange, New Jersey

Monday, July 20, 2009Invites will be mailed in May.To reserve your playing spot orinquire about sponsorshipopportunities, please

contact Sheila Gibbons at866-808-CURE (ext. 902).

Visit our event web pagefor more information.

2009 Event Sponsors:Anonymous Firm; Brigade Capital Management;Eric Cole; Harrah’s Resort Atlantic City; Carney Hawks;Imperial Capital; InTrade Group; Katten Muchin Rosenman;Kramer, Levin, Naftalis & Frankel; Norm Louie;Modell’s Sporting Goods; RBS Greenwich Capital;Richards Kibbe & Orbe; Edgar Sabounghi; Ian Sandler;the Sandler Family; SpadeClub.com;TD Securities; andthe Yu Family.

A ROYAL FLUSHfor CCF’s First Annual

POKER FUNDRAISER

Lisa Yue , CCF president and Jason Alpin, tournament winner

Attendees playing poker at Strata

A ROYAL FLUSH

POKER FUNDRAISER


More Family Fundraisers…• In September 2008, Mary Andrea and Shari Burns,teachers from Eastbury Elementary School in Glastonbury,Conn., organized a walkathon in memory of Colette Lane,grandaughter of Principal Dr. Sheryl Harriman. Colette was 19months old when she died of cardiomyopathy. On the day of thewalkathon, students and staff wore pink shirts as a tribute toColette’s favorite color. Their efforts helped raise more than $1,700.

• Janessa Cavallo and the Iona College Delta Beta sororityin New Rochelle, N.Y., hosted “Punk-d,” a charity concert withcollege bands on November 22. The concert raised funds forCCF in memory of her father who passed away suddenly fromcardiomyopathy.

• The Fraser family held a bowling fundraiser, Cole’s Bowl fora Cure, in honor of their son’s first birthday. More than 100people attended the February 22 event in Ontario, Canada,which included a live band, face painting for the kids anda silent auction of many donated items from the community.The event raised more than $3,000.

• Melissa Witt and Sharon Belles held their Second AnnualSweetheart Social fundraiser February 28, at the QuiltedCottage in Saginaw, Mich. The event, a silent auction ofbeautifully hand-made quilts, was planned in honor of Melissa’sdaughter, Samantha, who has dilated cardiomyopathy.

CCF UPDATES

� GEORGIAChildren’s Healthcare of Atlantaat Egleston, Atlanta, Ga.Conference Center, Classroom 5April 25, 2 - 4 p.m.Guest speaker Dr. Mahle will speakon new medical technology and stemcell research as it relates to pediatriccardiomyopathy.

� MASSACHUSETTSBoston Children’s Hospital,Boston, Mass.Pavilion 1 Meeting RoomApril 28, 6 - 8 p.m.June 23, 6 - 8 p.m.August 25, 6 - 8 p.m.October 27, 6 - 8 p.m.December 8, 6 - 8 p.m.

� MICHIGANC.S. Mott Children’s Hospital,Ann Arbor, Mich.Meeting date & time to be determined

� NEW YORKGolisano Children’s Hospital,Rochester, N.Y.Strong Children’s Heart Center,Room ACF-DMarch 14, 11 a.m. - NoonJune 13, 11 a.m. - NoonSeptember 12, 11 a.m. - NoonDecember 12, 11 a.m. - Noon

� NORTH CAROLINADuke University Medical Center,Durham, N.C.McGovern-Davidson Health Center,Room 4902March 26, 6:30 - 8 p.m.April 23, 6:30 - 8 p.m.May 28, 6:30 - 8 p.m.June, Baseball game outing. Details TBD.September 24, 6:30 - 8 p.m.October 22, 6:30 - 8 p.m.

CCF FAMILY FUNDRAISERSWorldWide Group Holiday PartyRaises Funds for CCFCCF parent, Heather Tuckerand World Wide Group,Spokane,Wash., chose tosupport CCF at their holidaycharity luncheon. The event,held on December 17, 2008,raised more than $6,500for CCF. The event honoredHeather’s daughter, Evangeline,who was diagnosed with dilated cardiomyopathy and is nowtwo years old. Heather and her husband, Joshua, created a video(see Families Create DVDs article) to show at the event whichwas attended by over 50WorldWide employees.

“I found CCF online while doing a search in November of2007,” says Heather. “I have been profoundly grateful for allthe help CCF has provided my family.” Heather knewWorldWide Group sponsored a different charity each Christmasand persistently followed up for two years until the companyselected CCF this past Christmas.

Update on CCF’s Parent Support GroupsCCF support groups offer a chance for parents of affected children to shareinformation in an informal setting and connect with others who are facing similarexperiences. Meeting four to six times a year, CCF has five support groups currentlymeeting at hospitals around the country. Scheduled groups are listed below. Newgroups are being formed in other states. Contact Kella Boyer, 866-808-CURE, ext. 905,to learn more about our existing groups or to see if a group is forming near you.

WOULDYOU LIKETO HELPWITHA SUPPORT GROUP?CCF is searching for parent volunteers for new groups in Miami,

New York City, Houston, Cincinnati, Philadelphia and Omaha.Again, contact Kella Boyer at ext. 905 to learn more.


CCF UPDATES

$10,000 and Over

Jeff Altman FoundationBank of America Foundation

CIBCWorld MarketsEmil Costa

Kramer Levin Naftalis & FrankelNorm Louie

Medtronic FoundationMorgan Stanley

Richards Spears & OrbeEdgar Sabounghi

$9,999 – $5,000

Anchorage Capital GroupAngelo, Gordon & Co.Evan & Beth Bernardi

Blank RomeBond Street CapitalAndrew Brenner

Brigade Capital ManagementCamulos CapitalBenji Cheung

Citigroup Global MarketsCleary Gottlieb Steen & Hamilton

Lucas DetorDeutsche Bank SecuritiesRobert & Karen Dishner

Fried, Frank, Harris, Shriver &Jacobson

Robert & Heather GallivanBill & Cynthia GoebelbeckerGoldman, Sachs & Co.Shelley GreenhausHunton &WilliamsICAP HighYield

Jefferies & CompanyJP Morgan Securities

Katten Muchin RosemanKBC Financial ProductsStephen & Jennifer LehnerMandel, Katz & Brosnan

Lee MillsteinNewedge USA

Taconic Capital AdvisorsTullett Prebon High Yield

Wachtell, Lipton, Rosen & KatzEddie & Lisa Yu

$4,999 – $1,000

Abrams CapitalAkin Gump Strauss Hauer & Feld

Dan & Stacie AllenRobert Ambriano

Rich Barrera & Purnima PuriSteven Bleier

Richard BrennenBroadpoint CapitalMatt Carter

Chatham Asset ManagementSheree Chiou

CIBCWorld Markets, Real EstateFinanceEric Cole

Kevin & Ursula CorganElks Cranford Lodge

Credit SuisseJames Croom

Victor & Patti DiSantoTom & Shawna DosterTom & Margaret Driscoll

Jon EckertEpic Asset Management

Jared EpsteinRoger Gilbert

Robert & Dana HamweeMalone & Jennifer Hart

Mike HeaneyAndrew & Rachel HeeMike & Laura HenderlongMike & Jennifer Hommefyer

Lincoln IsettaDavid & Sarah Johnson

Joseph KasperMonica KeanyKids Helping KidsMike Kirsh

Jonathan KolatchDaniel & Lauren KruegerRobert & Jackie Larsen

Margaret LeeLehman BrothersJames MalleyJoe Mannello

Alain & Claudina MarcusEugene & Renae MartinClint & Kourtney MatterMcDermottWill & EmeryMiller Buckfire & Co.Kate O’ConnorJohn O’Meara

Dan & Lauren OrnsteinGene & Carmen PagnozziMichael & Leslie Petrick

Posman BooksRiva Ridge Capital ManagementDonald & Mary Lou Rossi

RothschildDan Ryan

Jacob & Melissa SabinWhitaker SecuritiesScott & Sarah Snell

Southpaw Asset Management

Stonehill Capital ManagementNeal & Constance SullivanTheuerkorn FoundationVan der Linden Family Fdn.

Vanessa’s Big Heart FoundationToddVannucci

Venor Capital ManagementWagner Family FoundationMark & EricaWarner

$999 – $500

Gary AlbahaeKen & Doreen Amano

Archer Capital ManagementAndrew & Heidi ArthurThomas & Shawn BoyceJohn & Barbara Callahan

Bob CarrollCaspian Capital Advisors

Robert ChuiTim Coleman

James & Stephanie CullinaneMaureen D’AllevaVincent D’ArpinoKathleen Dering

Eastbury Elementary SchoolKaren Eltrich

Edward Farscht & Lynn JaegerPeter FernandezStephen FlynnRobert Frahm

Robert & Jill FranzDoug & Shawna FrolandKen & Melissa GlassmanRichard & Anne GrissingerJames & Sheryl HarrimanCarney & Melissa HawksTim &Tami HoranDaphne Hsu

JMG Capital ManagementBryan & Suzanne KarenJed & Mary KellyGeorge KhouriDavid Klein

Clint & Heather KollarStuart & Nicole KovenskyJohn & Jean LeporeJoseph Lyons

Michael & Cynthia McEachernThomas Mullarkey

Lawrence & Jillian NeubauerMarty & Marina O’Malley

Ann RaileyRestoration Capital Management

John RobinsonMarc & Laurie Rollo

Armins & Cynthia RusisJason Safriet

Adam & Heather SavareseTom & Kathryn SaxtonChaney Sheffield, Jr.

Jeffrey & Patricia ShillingTerri Lynn Stump

Michael & Kristin ThomasSpencerWells

John & JessicaWithrowEddy Zergivon

$499 – $250

Sunil AggarwalAnton Anikst

Carolyn BeckedorffSeth Bernstein

Brian & Lynne BordwellJohn & Deborah BowmanTed & Aileen Burdick

Peter CarrollCurtis & Lauralee Chamberlain

Chesapeake PartnersSergia Coffey

Marilyn & Merle DanielPatricia DeLucaCarla DenlyRobert DepiroLeslie FinermanJames Fitzpatrick

Stephen & Patricia GerberShelley Gifford

William & Jean GoebelbeckerMichael &Whitney GomezRobert & Lori HamiltonBrent & Melinda Hanson

Jed HartRoger & Judi HillRoger JosephJoo In Kang

Rick & Kristin LaschAlan MaislenEdith Mazza

Jeff & Noelle MillerEmilie Ng

Justin O’HaraMichael & Ellen O’Hare

Jeff PanzoJennifer ParkerIgor Pavlov

Laurent RenardRyan & Mandy RussellGreg & Cindy RyanBrian SteinbergIra & Shelley Taub

Jim & Corinna TaubnerUS Sailing Team

Bob & Annette VoreyerStephenWalker & Diane DeLuca

Darryl WebsterJack & KatherynWrightJanet Yang-Devinney

DixonYeeBill & Jean Yue

Dick & Maggie Yue

The following corporations, foundations and individuals have made significant contributionsto CCF, and we gratefully acknowledge their generosity and commitment to helping us findcures for tomorrow. Due to space limitations we are unable to acknowledge all of our2008 supporters but extend our heartfelt thanks to those not listed.

If an error has been made, please accept our sincere apologies and notify us so that we may correct our records.

Our Circle of Hearts:HONORING 2008TOP DONORS

Our Circle of Hearts:


GENERAL NEWS

October DeclaredNATIONALSUDDEN CARDIACARRESTAwarenessMonthIn September 2008, the U.S. Congresspassed a resolution declaringOctober as “National SuddenCardiac Arrest Awareness” month.This legislation is designed to addressthe lack of national understandingabout sudden cardiac arrest (SCA).Every year, during the month ofOctober, organizations focusing onheart-related matters will implementactivities to raise awareness aboutthe risk of SCA. The goal is toimprove the public’s ability to identifywarning signs, encourage individualsto seek timely medical attention, andpromote the need for furtherresearch into this silent killer.

NEW NIHWEBRESOURCE: UsefulInformation onClinicalTrialsRecognizing that children are not just“little adults,” the National Institutesof Health (NIH) has launched a newwebsite dedicated to providing parentsand healthcare providers with informa-tion on children’s medical research.The site, Children and Clinical Studies(www.nhlbi.nih.gov/childrenandclinicalstudies/index.php), covers topicssuch as how studies are conducted,participant safety and privacy, anddefinitions of common terms encoun-tered in clinical trials. Using both textand short videos of children, parentsand providers, the NIH explains theimportance of conducting researchin children, the rewards and challengesof participating, and things to considerbefore deciding to enroll your child ina clinical trial.

At the 2008 American HeartAssociation Scientific Sessions,Celladon Corporation presentedthe positive findings of a geneticallytargeted enzyme replacement therapy,Mydicar, that they are developingto treat advanced heart failure.Under the guidance of Celladonco-founder Roger Hajjar, M.D.,director of the CardiovascularResearch Center at Mount SinaiSchool of Medicine, NewYork,the newly developed therapywas shown to be safe and to haveimproved the heart function in sevenout of nine adults in Phase 1 clinicaltrials. Dr. Hajjar will continue withPhase 2 of the study, which isexpected to enroll 46 patientsfrom 13 hospitals.

The Mydicar treatment involvesa one-time infusion of a benignvirus that transports the gene thatproduces enzyme SERCA2a forthe heart. This enzyme plays animportant role in ensuring that theheart contracts and relaxes properly.In late stages of heart failure, it wasfound that the enzyme levels drop.Mydicar repairs this moleculardefect by restoring the depletedenzyme SERCA2a in the cardiacmuscle, thereby reversing the

cardiac disease and improvingcardiac function.

“This is different than what has beencalled enzyme replacement therapyin other diseases where people havemanufactured and administered theenzyme into the bloodstream ratherthan introduce the gene that codesfor the enzyme,” states CCF MedicalAdvisor Dr. Steve Colan, whoreviewed the study findings. “Thegene approach has a much higherlikelihood of success because theenzyme gets produced in the celland continues to be produced longterm instead of requiring repeatedinfusions.”

He expects the type of cardio-myopathy patients that are mostlikely to respond favorably toMydicar are those with acuteonset dilated cardiomyopathy.“The hypertrophic and restrictivecardiomyopathies would be unlikelyto respond because their myocytecontractility is generally normal,”Dr. Colan noted.

Current trials are being conductedon adults first for two reasons: tofurther assess safety and effective-ness before it is introduced to thepediatric community and to resolve

the concern thatgene delivery couldaffect the reproduc-tive cells of youngerpatients.

FirstTrial of GENETHERAPY forADVANCED HEART FAILURESHOWS PROMISE


FOR FAMILIES

QAwith Melissa Groman, LCSW

Melissa Groman is a licensed clinical social worker in private practice in

New Jersey. As a marriage therapist, she has been helping couples create

satisfying, loving relationships for more than 20 years. Her work has

focused on the gentle understanding of human relationships and helping

people move forward through difficult times.

&Maintaining a Marriage or RelationshipThrough DifficultTimes

Maintaining a marriage or committedrelationship can be difficult, especiallywhen caring for a child with a chronicillness such as cardiomyopathy. What arethe most common things that can causestress and tension in a marriage underthese circumstances?

We all come into a marriage with ourown unique set of hopes, expectations andneeds. We also bring along our individualbarometer for tolerating discussions, intensefeelings and upheaval. It is typical for onespouse to easily express their emotions andthe other to have great difficulty knowinghow they feel and how to talk about it.Emotional conversations can be over-whelming to some, while the absence ofemotional dialogue can feel abandoning toothers. One partner may have the ideathat it’s best to minimize attention to theillness and to keep things “normal.” This

may lead to feelings of frustration ordismissal of what the other partner maybe experiencing. For the spouse who feelsanxious or angry, this can be upsettingand may create a feeling of distance in themarriage. Anxiety, anger and frustration arenormal—though often painful feelings—forboth spouses. The key is to learn how todeal with them in a way that is good forthe relationship and fosters closeness.

Facing an overload of responsibilities,partners often wish their spouse couldmind read and know how to communicatewith them. Sometimes spouses believe thatif their partner really loves and understandsthem, they would know what to say or dowithout having to be asked. Accepting thatgood communication takes practice and isnot a natural by-product of love can go along way towards making a better marriage.

What are the top things you advisecouples/partners to do to maintain ahealthy and happy relationship?

I suggest that couples commit to makingtime weekly, and in non-crisis times, tohave “crucial conversations.” Crucialconversations can be divided into twomain categories: business and emotional.Emotional crucial conversations can includediscussions about feelings—such as fear,anger and frustration—and thoughts aboutthe future. Business crucial conversationscan include household tasks, finances,parenting issues and family priorities.Couples who can agree to consult witheach other have a better chance at ridingout the stormy times intact.

Paying attention to the effect your ownwords and actions have on your spouse cango a long way in helping communication

• Take time out for yourself and give your partnerpermission to do the same.

• Be willing to ask for help specifically and pleasantly.• Avoid using emails and texting. Try to speak directlywhenever possible.

• Understand your spouse’s ability to tolerate the unknown,grief and medical information. Don’t push for morediscussion, assistance or space if your spouse is attheir limit.

• Remember to just listen to your spouse sometimes.Let your spouse talk freely without commenting orcorrecting.

• Show consideration to your spouse and continue to say“please” and “thank you.”

• Stay affectionate with your spouse and maintain a healthyintimate life.

• Acknowledge what your spouse does right and whatyou find most helpful.

• Build a network of supporters who can listen and helpwhen you need more than your spouse can give.

• Be careful of outside influences on the marriage, suchas in-laws or friends, who may be too opinionated orinterfering. Put your marriage/spouse first.

• Check your expectations to see if they are realistic giventhe current situation.

• Seek professional help when things get rough.• Communicate how you feel to your partner in anhonest and direct way. Say what you mean in a nice way.

• Use “I” statements as much as possible (e.g. “I feelfrightened when you yell.” Or “Is there a way I can sayhow I feel that will be okay with you?)

KeepingYour Marriage Healthy and Strong continued, page 11


FOR FAMILIES

Tiana spent the next several weeks in thehospital. Charles and his wife, Jackie, werethen told by doctors that Tiana had dilatedcardiomyopathy and that she may need aheart transplant to survive. They weredevastated,“I left the room; I felt like I wasgoing to die,” said Jackie. “Charles stayedbehind and they told him that Tiana mightnot make it through the night.”

Physicians ran myriad tests onTiana andevery member of the family to try to finda cause, but like the majority of pediatriccardiomyopathy cases, the cause was neveridentified. Cardiomyopathy in children canbe either acquired (through a viral infectionor cancer chemotherapy) or inheritedthrough one parent or both parents. InTiana’s situation, they thought the diseasemight be related to a mitochondrialdisorder but test results were inconclusive.

TheTillmans felt as though they weresuddenly thrust into a frightening, newworld where the outcome was unknown.“After every procedure, every test, it feltlike the hour glass was turned over andwe were racing against time,” said Jackie.With each day, theTillmans hoped thatTiana’s heart would recover or stabilize,but instead her condition continued todeteriorate.

The most heart-wrenching day camewhen Charles and Jackie were toldthat the only option for Tiana was aheart transplant. TheTillmans had manyreservations about the transplant and herquality of life afterwards, but after long,difficult discussions withTiana’s doctors,they made the decision to go forwardwith a heart transplant. “We knew thatthat’s what we needed to do,” Jackie said.“to give her a chance at life.”

“I think probably the toughest thing thatI had to battle with, and I still battle withit now, is that I knew in order for mydaughter to live, another kid had to die,”Charles said.

Trying to make sense of all that hadhappened to their family, both Jackieand Charles searched for answersand support. It was the Children’s

Cardiomyopathy Foundation (CCF) andthe Chicago Bears that threw them lifelinesand gave them the encouragement tomove forward.

CCF provided the informational andemotional support that Jackie needed.While in the hospital, she searched onlinefor answers and found CCF’s website.“It was the only thing that came up,”Jackie said. “I registered right there inthe hospital.” Jackie found guidance andanswers in CCF. “It gave me knowledgeand reassurance that I wasn’t alone.”

For Charles, his team provided an anchorof support. “My teammates gave mestrength by believing in me,” said Charles.“They stuck by me the whole time, werevery supportive in every way. Not justmy teammates but the whole Bearsorganization.”

On August 31, after 97 days facingseemingly insurmountable odds,Tiana leftthe hospital with a new heart. It was adifficult and long journey for the family,filled with shock, pain and hope. Life is

very different now for the Tillmans. Thereare many visits with the cardiologist andendless doses of medication. But in theend it is something that has made themall stronger.

“This helped my mental toughness. Youalways have to bring your “A” game!”Charles said.

“It teaches you about letting go; that youdon’t have control over everything,” saidJackie. “My family was brought closerand it’s made me stronger in love, faithand family.”

CCF was a lifeline for Jackie and now shewants to give back. She hopes to start aCCF support group in Chicago and getmore involved with CCF in other ways.Jackie looks back at the experience with astrengthened faith, “I felt like God’s timingwas perfect because looking back on it,everything happened so perfectly,” shesaid. “I would have loved if it never hadhappened, but every detail, every moment,was like a master plan. Tiana lived throughthings the doctors didn’t know if she wouldor not. I think what I wanted to happenand when I wanted them to happen wasn’trealistic, but His timing was perfect.”

My daughter Tiana Tillman was born anormal healthy baby girl on Feb. 11, 2008,and thrived for three months. Tianabegan showing signs of a cold on SaturdayMay 17. OnTuesday, Tiana was taken toChildren’s Memorial Hospital in Chicagoby helicopter because her heart was failing.I can’t even begin to explain our shock,pain and disbelief. Once we arrived atChildren’s my husband and I were toldby the doctors that Tiana had dilatedcardiomyopathy. Tiana lived in the ICU forthree months. Our hope for her the firsttwo weeks in the hospital was that herheart would improve on its own.

We began researching every optionavailable for Tiana, including everygenetic disorder, heart information,cardiomyopathy and heart transplants.Tiana did not get better and there wasstill no explanation for why she developedcardiomyopathy.

We placedTiana on the heart transplantwaiting list two weeks after she was hospi-talized. Placing her on the waiting list wasvery hard for us, to say the least, becausewe didn’t want to believe our three-month-old baby needed a new heartto live. Everyday we hoped her heartwould begin to heal itself but that neverhappened. While waiting for a heartTiana’s health slowly deteriorated: she

TheTianaTillman StoryContinued from page 1

A PARENT’S PERSPECTIVEBy Jackie Tillman

Talya andTiana Tillman


FOR FAMILIES

go more smoothly during stressful times.Each partner’s ability to tolerate ambiguity,fear, grief and frustration can vary greatly. Itis often helpful to step back and study howyou express yourself and the effect it hason your partner. Do you raise your voice,criticize, demand or sound harsh? Do youwithdraw? What causes your spouse toretreat or to come closer? Be aware ofyour goals and motives. Also, look at howapproachable you are. Do you make itdifficult for your spouse to say what theyneed or feel? Do you yell, point out faultsor past errors, leave or shut down? Aimfor understanding and respect at all times.

Couples who take time out to be alonetogether usually fair better than coupleswho do not. Couples can take turns pick-ing pleasurable activities that appeal to oneor the other or both. Couples who make adecision to keep working together can buildresiliency, a fortress of strength and sharedunderstanding in the relationship.

When a child is ill there are many medicaldecisions that must be made. Sometimesparents disagree on one or more of thesedecisions. How can parents work togethermore effectively to make these difficultdecisions together?

You may have different ideas about yourchild’s care—such as pain management,time, activity restrictions, your child’swishes—but each of you ultimately wantswhat is best for your child. Realize thereis not always one right answer.

Some parents believe that they are respon-sible for their child’s illness. This kind ofself-blame can lead to undue pressure tocontrol or fix things. Understanding thatparents cannot control the diagnosis butcan work together to take the best possiblecare of everyone helps lift this burden.When discussing options, keep conversa-tions primarily focused on the facts andinformation. Be willing to be direct aboutyour preferences, but take the time tovalidate your spouse’s concerns. Usingphrases like,“I understand your wish is to…,but I am concerned about that because…,”can help dialogue go more smoothly.

Also, having crucial conversations ahead oftime can help reduce stress and fear-basedthinking when it comes time to makingemergency decisions. When talking thingsthrough, create good circumstances: don’thave discussions on an empty stomach orwhen either of you are very tired. Respectyour spouse’s schedule and time prefer-

ences for discussions. Some spousescan talk for hours, while others canonly tolerate a short factual discussion.These styles are not indicators of love,care or connectedness, as much as theyare of one’s own experience, ability orsafety zone. Couples can learn to adaptto each other’s communication needsand meet somewhere in the middle.

If a family or couple would like toattend counseling, how can theyfind a therapist in their area that isknowledgeable about common issuesassociated with caring for a seriouslyill child? What credentials should theparents look for?

While it is best to get a recommenda-tion from a friend, doctor or socialworker, therapists can be found on-lineor through your insurance company.Make sure that the therapist hasexperience working with couples, has

a state license and proper training. Thetherapist should help to facilitate productivedialogue, offer support and foster resiliency.If you have concerns about the therapy,you should voice them to your therapistwho should welcome them and seek toaddress them.

Often, parents will put their life on holdjust to care for their critically ill child andrisk “burn-out.” What do you suggest forparents dealing with this situation andhow can parents still take time out forthemselves, individually and as a couple,without feeling guilty?

Guilt implies that one is not living up toan obligation. Parents forget that takinggood care of themselves and their marriageis part of the obligation of taking care oftheir child. Burn-out occurs when parentsignore their own needs and focus solelyon the needs of their child. If a parent isto maintain a stable presence in their child’slife, they have to remember to nourishthemselves on a regular basis. Simple thingsthat allow for a brief escape or to help letoff steam are psychologically necessary.Moreover, when parents allow themselvesto pursue an interest outside the bubble ofthe illness, they usually find that everyone—self, spouse, child—benefits.

No one is able to maintain a perfectbalance of caring for themselves, theirmarriage and their child, especially whileworking and running the house. Makingthe effort to be aware and do even a fewsmall things on the checklist for maritalhealth can go a long way in keeping therelationship healthy and strong.

Melissa Groman can be reached at973-667-8777 or through her websitewww.pathtohealing.com

Accepting that good

communication takes practice

and is not a natural by-product

of love can go a long way

towards making a better

marriage.

Maintaining a Marriage or RelationshipThrough DifficultTimescontinued from page 9

battled infections, was intubated for twomonths, was paralyzed for three weeks, wason ECMO for 13 days, and then the BerlinHeart for two days before receivinga heart in July.

We are eight months out from transplantand Tiana continues to do well with hernew heart. Tiana is a tough baby with anattitude; that’s why I believe she made it...She loves to sing and clap. She has thisamazing spirit about her.

This experience has put us into a world wedidn’t know existed. We have learned somuch and met many families with similarexperiences. Our goal now is to work for acure, to help families in need, and to keepinforming others about cardiomyopathy andorgan donation.

HearttoHeart

P.O. Box 547,Tenafly, NJ 07670

Address Service Requested

Non-Profit Org.U.S. Postage

PA I DPermit No. 30Newark, NJ

Volume 6, Number 1 • Spring • Summer 2009

Heart CampsSusannah Craig, Director ofCamp Bon CoeurMarch 23-30

Left Ventricular Non CompactionCardiomyopathyDr. John Jefferies,Texas Children’s HospitalApril 20-27

Clinical TrialsAllison Cirino, CGC, Elizabeth Sparks, N.P.,Brigham andWomen's HospitalMay 4-11

Pediatric Heart TransplantsDr. Beth Kaufman, Children’s Hospitalof PhiladelphiaOctober 5-12

For those of you who have missedprevious guest sessions, transcripts ofpast Q&A sessions are available. Thecompilation, Answers from the Experts:CCF Cyberguests, covers topics such as:special education and other schoolrelated Issues, medications and commonside effects, nutritional and feeding issues,exercise restrictions, echo and lab reports,genetics, spectrum of grief, and pace-makers and defibrillators.

Parents and healthcare professionals whowould like to subscribe to CCF’s listservor wish to receive a copy of Answers fromthe Experts: CCF Cyberguests can contactKella Boyer at 866-808-CURE, ext. 905or [email protected].

HOW CAN IHELP CCF?

You can make a differenceby planning a community eventto raise awareness of pediatriccardiomyopathy. Events not onlyraise critical funds for CCFprograms, but they also help

people understand that pediatriccardiomyopathy is an importantand serious health issue thatwarrants their attention. CCFstaff can provide information onhow to create simple, fun-filledfundraisers based on your goalsand schedule. We can adviseon event planning, publicityand development of eventmaterials to ensure that your

event is a success.Please call Sheila Gibbons at866-808-CURE, ext. 902, forhelp with your fundraiser.

Update on CCF’S MEMBER LISTSERVOpen to parents of children with pediatric cardiomyopathy and professionals in thefield, the CCF listserv, known also as the CCF Forum, is one of the most popularresources offered by the Children’s Cardiomyopathy Foundation. The listserv allowsmembers to share information and provide support to each other via group e-mails.Occasionally, expert guests are scheduled to answer questions posted by listservmembers. Listed below are scheduled guests for the next few months.

HearttoHeartchildrenscardiomyopathy.org/downloadable_files/... · CCF UPDATES CCFBoardmembers,...

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