Monday, July 20, 2009

Montclair Golf Club, NJ

July 20, 2009

Welcome to the Children’s Cardiomyopathy Foundation’s 7th Annual Golf Classic! I hope youenjoy a wonderful day golfing with friends and colleagues for a great cause.

Today unites us in one common mission: to make life better for the children and families affectedby cardiomyopathy. Your unwavering support over the years has made a tremendous difference inhelping us to increase the public’s understanding of pediatric cardiomyopathy. Advancing researchcontinues to be a top priority, and due to your participation in this event, we have been able tosupport many new and collaborative studies to ensure that children with cardiomyopathy have alonger life expectancy. Plans are in place for CCF’s Second International Scientific Workshop, whichwill facilitate the exchange of information and ideas among the leading experts on the disease.

Our cardiomyopathy community continues to grow to more than 1,150 members as we reachmore diagnosed families through hospitals and other heart-related organizations across the U.S.and Canada. To address the needs of raising a child with a chronic disease, we will be developingtwo new family resources. One will be a school education packet to guide families in educatingschool personnel on the accommodations and modifications needed for a school-age child withcardiomyopathy. The second project will be to enhance CCF’s website to offer social networkingopportunities for families to share their photos and stories, exchange information and tips, andsearch for other families and medical specialists in their area. This will help to build a strongerand more dynamic cardiomyopathy community.

These are only a few of the many highlights from our 2009-2010 activities that you are helpingto make possible. Please take a look at what our parents and researchers are saying about CCFat the back of this program. Their words are testament to the importance of your contributionsand involvement. I would like to close with a sincere “thank you” for caring about the childrenand families affected by cardiomyopathy.

Warmly,

Lisa YuePresident & Founder

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SCHEDULE OF EVENTS

10:30 AMRegistration

•11:00 AM

BBQ Lunch & Driving Range Opens•

12:00 NoonShotgun Start - Four Player Scramble

•5:30 PM

Cocktail Reception & Silent Auction

•6:30 PM

Dinner Buffet & Golf Awards•

7:30 PMSilent Auction Closes

GOLF FORMAT: Each member of the group tees off and the team selects the bestshot from all that were hit. Players then pick up their ball and play another shot fromthe selected best ball location. Players continue playing off the best shot until they finishthe hole. The team receives a score for the hole instead of each player. The maximumscore per hole is a double bogey. Players should pick up after two strokes over par.

Please turn your scorecard into the pro shop after play so that your team'sscore can be calculated.

GOLF CONTESTS & AWARDS:• Closest to the Pin (2nd hole of course 2, 7th hole of course 3)• Longest Drive (9th hole of course 2, 9th hole of course 3)• 1st, 2nd, 3rd, 4th place teams (foursomes with the lowest gross score)

SILENT AUCTION: Please refer to the separate auction list for descriptions andvalues. Before leaving, please check to see if you are the winning bidder and claimyour items.

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Anchorage Advisors, LLCAngelo, Gordon & Co., LP

Bank of AmericaChris Berry & Matt Lambert

Brigade Capital Management LLCBroadpoint.Gleacher & Joseph Mannello

Camulos Capital LPEmil Costa

Deutsche Bank Securities Inc.Robert & Karen Dishner

Fried, Frank, Harris, Shriver & Jacobson LLPRob Gallivan & Family

GFI Group Inc.Goldman, Sachs & Co.Hunton & Williams LLP

ICAP High YieldJefferies & Co. & Brian Hewitt

KLS Diversified Asset ManagementKnight Libertas

Kramer Levin Naftalis & Frankel LLPMandel, Katz & Brosnan LLP

Michael McLaughlinTaconic Capital Advisors LP

Tullett Prebon High Yield

ACKNOWLEDGEMENTSCCF would like to thank the following event sponsors

and in-kind donors for their generous support this year.

2009 EVENT SPONSORS

Platinum Sponsor

Katten Muchin Rosenman LLP Richards Kibbe & Orbe LLP

Bronze Sponsors

Edgar Sabounghi

Eddie & Lisa Yu

Silver Sponsors

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Tee Sponsors

Dan Allen & FamilyBGC Partners

CIBC World MarketsRichard Grissinger & Family

Mike HenderlongGeorge Khouri

Clint Kollar & FamilyJed & Carrie Nussbaum

Sandell Asset ManagementStark Investments

We gratefully acknowledge the volunteers and committee

members who have so graciously devoted their time

and energy to this event.

Lunch & Dinner SponsorsRichard Barrera & Purnima Puri Fdn.

Bond Street Capital, LLCCredit Suisse, Tom Mullarkey &

Jason SafrietJefferies & Co., Scott Haberman &

Steve RosenJoseph Kasper

Driving Range SponsorsEric Cole

Knighthead CapitalKolatch Family Foundation

Dan Ornstein & Family

Hole Sponsors

Sunil AggarwalChris ChangSusan ChenSachin Goel

Steve & Jennifer LehnerAdam Vengrow

2009 EVENT SPONSORS

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Acorns BookshopAmerican Girl

April Barton Salon Suite 303Bacchus Wine Made Simple

Bayonne Golf ClubBella Blu Restaurant

BJ WarehouseBLT Restaurants

Build-A-Bear WorkshopAnthony Caluori

Chelsea Piers Management Inc.Cupcake KidsDoodle Doo’s

Fantasma MagicEd and Lynn Farscht

Forge

Ed & Jeannine HeaneyMatt & Ann HeaneyHelen Hayes TheaterJoe Allen Restaurant

Kid OMike Kirsh

Lia Schorr Day SpaManhattan Children’s Theater

Moore Brothers Wine CompanyOXO InternationalJack Thekkekara

Shawn ThekkekaraTick & Company

Saks Fifth AvenueAndy Stock

Eddie Yu

Listings reflect contributions received up to July 7, 2009

Jeffrey Altman FoundationPeter Barry

Sheree ChiouMark Colm

Doug DaviesJon EckertJohn Florio

Robert Frahm IIIBill Goebelbecker

Pam LawrenceLerner Family Foundation

Michael PetrickBrian Potash

Lucille ProtosRBS Securities

Riva Ridge Capital ManagementKen RubinIan SandlerTom Saxton

Chaney SheffieldJay SpencerAndy Stock

Pedro UrquidiTodd VannucciAnna WachtDan Yarsky

ADDITIONAL ACKNOWLEDGEMENTSCCF would also like to thank our many Golf Classic donors.

Eddy Zervigon

IN-KIND DONORS

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What is the Disease?• A chronic and potentially life-threatening disease of the heart muscle.• Four major types – dilated, hypertrophic, restrictive, or arrhythmogenic right

ventricular cardiomyopathy.• # 1 reason for sudden cardiac deaths and heart transplants in children under 18 years

of age.• Can be acquired or inherited but currently 69% of diagnosed cases are of unknown

causes.

The Scope of the Disease• Approximately 30,000 children in the U.S. have cardiomyopathy, comparable to

the number of people with cystic fibrosis.• Affects 1 in 100,000 children with an estimated 1,000 new cases each year –

more than the number of U.S. children affected by pediatric aids each year.• Many cases are still not documented – for every diagnosed child there exists another

undiagnosed child at risk.• Gender, ethnicity, age, and socio-economic status are not a factor.

The Medical Realities• Compared to advances in treating congenital heart defects, outcomes for children

with cardiomyopathy are no better today than they were three decades ago.• Symptomatic pediatric cardiomyopathy surprisingly has a higher mortality rate

than childhood cancer.• Widespread pre-natal screening and diagnostic/genetic testing is not currently available.• Unlike other congenital heart conditions, there is is no treatment or cure to repair the

damaged heart or to stop the progression of the disease.

The State of Research• Less than 5% of the National Institute of Health and American Heart Association’s

annual research budget goes towards pediatric studies in cardiology, even thoughthe years of life lost in a child is much greater than an adult.

• Only 4 out of 29 cardiomyopathy grants funded by the National Institute of Health inthe past four years were focused on pediatric cardiomyopathy.

• Federal funding on pediatric cardiomyopathy is estimated to be less than $7 millionversus $318 million for pediatric aids and $70 million for leukemia (one of 15 formsof childhood cancer).

FACTSABOUTPEDIATRICCARDIOMYOPATHY

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Chris Berry & Matt Lambert

Emil Costa

Robert & Karen Dishner

Rob Gallivan & Family

Brian Hewitt

Michael McLaughlin

Eddie & LisaYu

p r o u d l y s u p p o r t t h e

CHILDREN’SCARDIOMYOPATHY

FOUNDATION

Ou r B r o n z e Fam i l y S p o n s o r s

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Proud to support the

Children’s CardiomyopathyFoundation

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is honored to be a sponsor of

the Children’s Cardiomyopathy Foundation

and its 7th Annual Golf Classic

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A proud supporter of the Children’s Cardiomyopathy7th Annual Golf Classic.

Proudly supports the

Children’s Cardiomyopathy Foundation

and the Annual Golf Classic 2009

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Goldman, Sachs & Co.

Is ProudTo Sponsor TheCHILDREN’S CARDIOMYOPATHY

FOUNDATION

and theANNUAL GOLF CLASSIC 2009

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IS A PROUD SPONSOR OF

THE 7th ANNUAL GOLF CLASSIC 2009FOR

CHILDREN’S CARDIOMYOPATHY

FOUNDATION

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KLS is thrilled to support theChildren’s Cardiomyopathy Foundation

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is proud to be a sponsor of the

Children’s CardiomyopathyFoundation Golf Classic

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Our Best Wishes to the

Children’s Cardiomyopathy Foundation

Continued Success For Your Good Work

Creating a Future of HopeFor Those With Pediatric Cardiomyopathy

A Cause for Today… A Cure for Tomorrow

www.childrenscardiomyopathy.org

866-808-CURE

The Children’s CardiomyopathyFoundation (CCF) is dedicated tofinding causes and cures for pediatriccardiomyopathy through the supportof research, education, awarenessand advocacy.

CCF actively works with themedical, scientific and professionalcommunities to advance medicalknowledge and offer support tofamilies affected by this chronicheart disease.

Find out more about our freepatient resources and researchgrant program for investigatorsstudying pediatric cardiomyopathy.

Together, we can create a future ofhope where more lives are savedand every affected child is able tolive a full and active life.

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WHAT PEOPLE ARE SAYING ABOUT CCF

“I have had a couple of families call recently who just raved aboutthe website. They found it so helpful, accurate, and well organized.Their cardiologists took the parents much more seriously and were morethoughtful about the children as a result.”

- Wendy Chung, MD, PhD, Columbia University

“CCF has opened up a whole new realm of understanding of the diseasethat has struck our family. The wealth of resources have provided uswith a level of knowledge we could find nowhere else, as well as asource of hope and comfort in the shared experiences of others touchedby this terrible disease.”

- Aimee Lindsay, mom to Tyler (9 mo, DCM/LVNC)

“CCF’s support has been tremendously important for my research andpatient care. Clinically,CCF is an important resource for my patients interms of information, support and networking. And CCF’s researchfunding has allowed me to pursue studies that I hope will ultimatelyimprove the lives of the children that CCF serves.”

- Stephanie Ware, MD, PhD,Cincinnati Children’s Hospital Medical Center

“CCF provided us with so much knowledge about pediatric cardiomyopathy;it is the only concise and accurate resource available to anyone with achild suffering from cardiomyopathy, and the listserv is so invaluable. Toknow that there were other families out there who understood what we weregoing through made a world of difference to us.”

- Priscilla McRae, mom to Zara (4 yrs, DCM)

Continued, next page

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“The work that the Foundation is doing is really important in helpingchildren like mine with cardiomyopathy.”

- Margaret Naden, mom to Marcus (11 yrs, DCM)

“I feel I hit the jackpot in finding your website. I cannot thank youenough for all of the information. I will be going forward with conversingwith the other families and doctors suggested.”

- Eileen Pohl, mom to Kerrigan (13 yrs, LVNC)

“CCF’s forum has saved my sanity more times than I can count overthe last four years. It’s a great place to turn to when you have questionsabout dealing with the schools on the one hand and the doctors on the other.It’s also a great place just to check in when you feel overwhelmed, grief-stricken, frustrated, or anything else because you know you are talking topeople who have been there.”

- Mary Wood, mom to Eli (14 yrs, HCM)

“The support of CCF has made it possible for me to focus on developingnew therapies in models of pediatric cardiomyopathy that I would otherwisenot have the funding to do. Your support has allowed me to makesignificant progress during this critical stage of my career.”

- Monte Willis, MD, PhD, University of North Carolina Hospitals

“When our daughter was diagnosed with cardiomyopathy as an infantsix years ago, we felt blessed to find the Children’s CardiomyopathyFoundation. Having the ability to connect with other families hasbeen a great source of strength and support for our family.”

- Audrey Callahan, mom to Grace (6 yrs, DCM)

BOARD OF DIRECTORS

Carney HawksBrian NoldIan Sandler

Eddie YuLisa Yue

Raymond Yue

MEDICAL ADVISORSWendy Chung, MD, PhD

Columbia University Medical Center

Daphne Hsu, MDChildren’s Hospital at Montefiore

Steve Lipshultz, MDUniversity of Miami Medical Center

Steve Colan, MDChildren’s Hospital Boston

Jeff Towbin, MDCincinnati Children’s Hospital

EVENT COMMITTEE

Dan AllenEvan BernardiDavid BershMatt Carter

Benji CheungDave Chou

Kevin CorganEmil Costa

Rob DishnerJames Fitzpatrick

Rob GallivanMatthew Glass

Bill GoebelbeckerEric GuevaraMike Kirsh

Dan OrnsteinSteve Rosen

Edgar SabounghiAdam Savarese

About theCHILDREN’S CARDIOMYOPATHY FOUNDATION

The Children’s Cardiomyopathy Foundation (CCF)is a national non-profit organization dedicated tofinding causes and cures for pediatric cardiomyopathy.Cardiomyopathy is the leading cause for suddendeaths and heart transplants in children under age 18.

CCF started in 2002 with one family’s determinationto call attention to this poorly understood heart diseaseand to take action on the lack of medical progress andpublic awareness. Since then, CCF has grown into aglobal community of families, physicians and scientistsfocused on improving diagnosis, treatment and qualityof life for children affected by cardiomyopathy.

CCF is involved in all aspects of the disease fromresearch and education to patient support, awarenessand advocacy. The Foundation has made greatstrides in bringing together experts from the medicaland scientific fields to advance knowledge onpediatric cardiomyopathy and in developing supportservices for those affected by this chronic disease.

Nearly $1 million has been committed to research andtreatment initiatives in the U.S. and Canada, and CCFhas led the way in establishing a biologic specimenrepository and planning the first international scientificworkshop. In the process, CCF has worked with manyesteemed organizations including the National Heart,Lung and Blood Institute, American Heart Associationand the National Organization for Rare Diseases.

CCF continues to be an invaluable lifeline to affectedfamilies providing information, resources and guidance.CCF’s educational materials are now distributed tomore than 70 hospitals in North America.

The Foundation’s hope for the future is that morelives will be saved, and every affected child will havea chance to live a full and active life.

Children's Cardiomyopathy Foundation • P.O. Box 547, Tenafly, NJ 07670866.808.CURE • www.childrenscardiomyopathy.org