The ACHA Actelion Fellowship Program

Hosted by ACHA, The Children’s Heart Foundation and the Pediatric Congenital Heart Association, this annual event brought together patients, family members, medical professionals, and supporters from across the country to connect with more than 140 legislative offices.

The ACHA ACHD Accreditation Program will raise the bar for ACHD care in the U.S., encouraging ACHD medical programs to strive to meet the established criteria. The program has 99 pieces of criteria broken into 19 sections.

2016 HighlightsHEART TO HEART ACTIVITIES MEDICAL PROFESSIONAL PROGRAMS

Heart to Heart Ambassadors

Lifelong Care Awareness

ACHA Webinar Program

Congenital Heart Walk

Online Community

ADVOCACY ACTIVITIES

2016 BY THE NUMBERS

AdultCongenitalHeartAssociation

72

150

500

1,000CURRENT

HEART TO HEART

& ACHA STAFFAMBASSADORS

MORE THAN

ADVOCATES

MORE THAN

50% 16%FACEBOOK ACHA WEBSITEMEMBERSHIPINCREASED BY

PAGEVIEWSINCREASED BY

TOTALING 11,010 TOTALING 444,000

TOPICS INCLUDED

VOLUNTEERS OFFERED

OFFICIALLY LAUNCHED THE ACCREDITATION PROGRAM DIFFERENT HOSPITALS HAVE APPLIED FOR THE FIRST CYCLE OF ACHD ACCREDITATION

ACHA PATIENT & FAMILY MEMBERS

PERSONALIZED INFORMATION AND SUPPORT

ACTIVEAMBASSADORS

ACHA MEMBERS ATTENDED 14 DIFFERENT WEBINARS IN 2016.

VIEWS IN 2016

ARCHIVED WEBINARS

HAD MORE THAN 4,700

(AVAILABLE ON DEMAND ON THE ACHA WEBSITE)

IN 29 LOCATIONS ACROSS THE COUNTRY TO SUPPORT THE MISSIONS OF ACHA ANDTHE CHILDREN’S HEART FOUNDATION

NEUROCOGNITIVE ISSUES IN ADULTS WITH CHD; END OF LIFE – ADVANCE CARE PLANNING IN CHD; KEEP ON MOVING: PHYSICAL ACTIVITY & CARDIAC REHAB IN THE ADULT WITH CHD; WOMEN’S HEALTH IN THE PERI- & POST-MENOPAUSAL CHD PATIENT

AWARDED 2 ADULT CONGENITAL HEART DISEASE(ACHD) MEDICAL TRAINING FELLOWSHIPS

The ACHA ACHD Accreditation Program

Congenital Heart Legislative Conference

FROM 19 STATES GATHERED IN WASHINGTON, D.C.,ON FEBRUARY 26-27TO TALK TO THEIR LAWMAKERS ABOUT CONGENITAL HEART DISEASE (CHD)

Dues $15,680 $20,080 Contributions $1,514,909 $1,568,313Grants $599,000 $463,000Programs & Events $173,717 $81,044Other $16,808 $4,728Total Revenue $2,320,114 $1,932,840

Revenue 2016 2015

2016 2015Education $1,332,879 $1,158,216 Advocacy/Outreach $350,154 $328,401Fundraising $287,772 $295,519 Administration $239,578 $150,704Total Expenditures $2,210,383 $1,932,840

Expenditures

PRESENTED ON THE IMPORTANCEOF LIFELONG CARDIAC CAREAT 22 EVENTS ACROSS THE COUNTRY

16,000+WALKERS

RAISED MORE THAN$1.8 MILLION

ACHA WEBSITE USERS INCREASEDBY 19% TOTALING 162,000

Fiscal year ended December 31, 2015 (in USD)

Contributions65.3%

Grants25.8%

Programs& Events7.5%

Dues0.7% Other

0.7%

Education60.3%

Advocacy/Outreach15.8%

Fundraising13%

Administration10.8%

20

Mary O. Aaland, MD Samina Ahmad Ms. Mary Beth Alderman, ARNP Jorge R. Alegria, MD Naser M. Ammash, MD Mrs. Martha Angerman Mansoor Arain, MD Melissa Argenio, MD Erle Austin, MD Deena I. Barber, RN, BSN Dr. Suying Barriga, MD Thomas M. Bashore, MD Robert W. Battle, MD, FACC Stanley D. Beder, MD Farhouch Berdjis, MD Mr. Tanmay Bhamare Dr. Gurur Biliciler- Denktas, MD Mark Bleiweis, MD Wendy M. Book, MD Andras Bratincsak, MD M. Elizabeth Brickner, MD Pamela G. Burg, MD Dawn Calderon, DO, FACC Neil Cambronero, MD Duke E. Cameron, MD Dr. Michael Camitta William Campbell, MD Frank Cetta, Jr., MD

Philip Chang, MD Ms. Patricia Chavarria John P. Cheatham, MD Ms. Hermyza Coleman Mrs. Katherine Collier Edward V. Colvin, MD Stephen C. Cook, MD, FACC Ms. Carolyn Coons Ms. Elizabeth Cortinez Timothy B. Cotts, MD Marcus J. Cox, MD Ms. Andrea Craven Dr. Andrew Crean, MD Marc G. Cribbs, MD Mrs. Zilda Crist Jane E. Crosson, MD William R. Davidson, Jr., MD, FACC Julie Dietz, MD John Doty, MD Michael G. Earing, MD Robert W. Elder, MD Alexander R. Ellis, MD, MSc Peter Ermis, MD Ms. Theresa J. Faulkner Stacy Fisher, MD Desiree Fleck, CRNP Lisa W. Forbess, MD

Richard A. Friedman, MD Stephanie Fuller, MD Hrair A. Garabedian, MD Michael H Gewitz, MD Ms. Lisa Gilmore Ms. Cynthia Glasglow David Gregg, MD Dan Halpern, MD Mr. Horace Harrell Ms. Tammy Harrelson Lopa P. Hartke, MD Marcus Haw, MD Ms. Karen Hendricks Ms. Jenifer Horn Arvind Hoskoppal, MD Dr. Pei-Hsiu Huang Dr. David Huneycutt, Jr. Jamie Jackson, Ph.D. Ms. Andrea Johnson Mr. Michael Joynt Ms. Kathryn J. Junge, RN Dr. Joseph D. Kay W. Aaron Kay, MD Ms. Christina Kennedy Dr. Natalie Kenny Dr. Yuli Y. Kim Ms. Nancy H. Klein, RN, BSN, CPN Scott Klewer, MD Marc Knepp MD Ms. Diana Knoedel, PA Mr. Ramesh Kodavatiganti Richard A. Krasuski, MD Brandon Kuebler, MD Dr. Michael J. Landzberg John R. Lane, MD Peter Lang, MD Dr. Warren Laskey, MD Larry A. Latson, MD David Laughrun, MD Ms. Shannon Laursen Christopher P. Learn, MD

Dr. Keane Lee, MD Chun Huie Lin, MD Ms. Tracy A. Livecchi, LCSW Jamie L. Lohr, MD Camila Londono-Obregon, MD Dr. David Lopez, MD Dr. Adam Lubert George K. Lui, MD Michael Luna, MD Ms. Teresa A. Lyle, RN, MN, CPNP Anthony Magalski, MD David Majdalany, MD Ms. Ana Maria Manrique Richard Martinez, MD David Mauchley, MD Elizabeth Maxey-Walsh, BSN Michael E. McConnell, MD Ms. Marion E. McRae, NP Alison K. Meadows, MD, Ph.D. Victor Menashe, MD Daniel E. Miga, MD Ms. Pam Miner, RN, MN, NP Tabitha Moe, MD Diego Moguillansky, MD Gary Monteiro, MD Phillip Moore, MD Dr. William Moskowitz Mr. Victor Mwansa Ms. Michelle J. Nickolaus, CRNP Mr. Jeremy Nicolarsen, MD Connie S. Nixon, RN Mark Norris, MD David G. Nykanen, MD Ms. Brenda O’Connell Mrs. Kathtyn Osteen, MSN Dr. James Perry Scott Pilgrim, MD Priya Pillutla, MD Margaret M. Powers Wolfgang Radtke, MD Agustin Ramos, MD

Leigh C. Reardon, MD Ms. Angela Reu John F. Rhodes, Jr., MD Mrs. Camille Richards, NP Ms. Roslyn Rivera, RN Dr. Ian Rogers, MD, MPH Anitra Romfh, MD Mr. Todd Roth Ms. Jody Rutz Aarthi Sabanayagam Ms. Tara Saleska Dr. Daniel Sanchez, MD Charlie J. Sang, Jr., MD Ms. Mary Schlater, APRN Mrs. Anne-Marie Senan Ms. Colleen Shipley Lynn M. Simko, Ph.D., RN, CCRN Harsimran S. Singh, MD Ms. Beverly Smulevitz, BS, RDCS, RVS Walter L. Sobczyk, MD Robert J. Sommer, MD Dr. Somkid Sridaromont Herbert Stern, MD Ms. Rachel Steury Dr. Ira B. Taub, MD Mark D. Townsend, MD Shane Tsai, MD Anne M. Valente, MD, PhD Juan Villafane, MD Ms. Marion L. Wachtenheim, MSW Subeer Wadia, MD Mrs. Molly Wallrich Gary D. Webb, MD Catherine R. Weinberg, MD Ms. Christina Wheelwright Ms. Kay William Ms. Latoya Wright

Membership and Support

2016 MEDICAL PROFESSIONAL MEMBERSJanuary 1, 2016 to December 31, 2016

ACHA Medical Professional Members not only support the vital work ACHA does to improve health for adults with CHD, but also demonstrate that as medical professionals, they have a vital stake in ACHA’s mission. The list below includes all paid professional members of ACHA for 2016.

Platinum ($250,000 & more) Actelion Pharmaceuticals US, Inc.

Silver ($10,000-$49,999) Edwards Lifesciences Foundation Gilead Sciences Inc. Houston Methodist Hospital Medtronic, Inc. Meil Family Foundation Spectrum Health Texas Children’s Hospital

Bronze ($1,000-$9,999) Anonymous AltaThera Pharmaceuticals BAE Systems Matching Gift Program Children’s Heart Center Nevada Children’s Hospital of Wisconsin CNA Financial Combined Federal Campaign Lucile Packard Children’s Hospital at Stanford

Mayo Clinic Mended Little Hearts of Binghamton Montefiore Medical Center Nationwide Children’s Hospital Paul, Weiss, Rifkind, Wharton & Garrison, LLP St. Jude Medical, Inc. Stanford University Medical Center The McGraw-Hill Companies The Wawa Foundation Thrivent Financial’s Thrivent Choice Program TJ Heyman and Jane McConnell Fund United Therapeutics Corporation University of Florida

Friends ($100-$999) Anonymous (2) 2HEARTS! AbbVie Foundation Employee Engagement Fund AmazonSmile Foundation

American Express Foundation Employee Giving Program Benevity Community Impact Fund Boston Society of New Jerusalem Bravelets, LLC Cavarocchi Ruscio Dennis Associates LLC Charity Gift Certificates Chevron Humankind Matching Gift Program ConocoPhillips CubeSmart, LP Dell Employee Giving Program DST Systems, Inc Due West United Methodist Church Expedia, Inc. F&F Distributors, Inc. Friendly’s Restaurant Front Range Stump Grinding LLC Gamma Psi Sorority Google Guy Carpenter & Company, LLC

IBM Employee Services Center JWT & Associates LLP #1 Kaiser Foundation Health Plan of the Northwest Community Giving Macy’s Foundation Madera Pulmonary & Sleep Disorders mGive Foundation Morgan Stanley PayPal Giving Fund PNC Foundation Pura Vida Bracelets Qualcomm Matching Grant Program QVC Raytheon Charitable Giving

United Health Group Employee Giving United Way of Coastal Fairfield County United Way of Greater Philadelphia & Southern New Jersey United Way of Northeast Florida University of Michigan Wilson Elser Moskowitz Edelman & Dicker LLP Wolters Kluwer

SUPPORTERS (BUSINESSES, ORGANIZATIONS AND FOUNDATIONS)January 1, 2016 to December 31, 2016

Investor ($50,000-$99,999) Mr. and Mrs. James Postle

Visionary ($5,000-$9,999) Anonymous Steven R. Flier, MD, and Carol Efron-Flier Mr. and Mrs. Tony Garvy Debra Harmon Donna Kinnaird Rosamond P. Warren

Patron ($2,500-$4,999) Anonymous (2) Ronny and Judy Altman The Fernie Family Benefactor ($1,000-$2,499) Anonymous (3) Jamil A. Aboulhosn, MD and Julie Kasem Tamar Adjoian Jacqui and Stephen Back Jerry Boegler and Brian Altman Anthony Castor, III Jean Chatzky Anne Coffman and Paul W. Schmidt Rees Davis Kay Deeney Cheryl and Bart Dickins Cecile Feagle Elyse Foster, MD and William Shalen, MD Jonathan N. Ginns, MD Kevin Gordon and Michelle Traeger Cindy and Richard Huie Anitha S. John, MD Yuli Kim and Stephen Gardner Robert and Deena Klaber Brian E. Kogon, MD Richard A. Krasuski, MD Daniel M. Lynn Margaret P. Martin and Devon Martin Mr. and Mrs. Sean McCarthy Dan and Joanie McDermott Tabitha Moe, MD Barbara O’Connor Alexander Opotowsky, MD, MPH Disty Pearson and Phil Zuckerman Marjorie Perloff, MD Michael Pernick Mr. and Mrs. David Query Camille Richards, NP Serina and Marlon Rosenbaum Dr. and Mrs. James R. Ruppel, MD Arwa Saidi, MB, BCh, FACC Mr. and Mrs. Jerome B. Schiffer Dean, Vicki, Wes, Deana, and Chelsea Schooler Stan and Claire Smith Margo Steurbaut Karen Stout, MD, FACC Glenn and Nancy Tringali Mary Troisi Heather Abbott Vogel Mr. and Mrs. Dan Walkes

Advocate ($750-$999) Mr. and Mrs. Raymond L. Costanzo Elizabeth Craig Holly and John Hancock George K. Lui, MD Mr. Richard Marks Robert and Linda Moore Susan Timmins

Leader ($500-$749) Anonymous (2) Naser M. Ammash, MD Marjorie and Andrew Bernstein Craig Broberg, MD Chad and Segen Chase Nicholas and Margret Chee William R. Davidson, Jr., MD, FACC Dean and Karen Dubey Susan M. Fernandes, MPH, PA-C Mr. and Mrs. William Gammon James Grange Marcus Haw, MD Lisa Kirkland, MD Bill and Georgia Krehbiel Christopher P. Learn, MD Karen and Charles Liamos Mr. and Mrs. Dan Majetich The Matson Family Adrian and Kimberly McCarthy Tim and Mandy McCarthy Pam Miner, RN, MN, NP Elahe Amani Naomi and Don Morshead Rachelle Moulton Rita Nadeau Lucia and Johannes Overgaag Martha M. Pauly Nancy and Benjamin Pernick Nick and Andrea Pottebaum Joanna and John Prince Craig and Nancy Schnuck Richard and Lynelle Smith Allison and Jeffrey Stachnik Tom Uher Tina M. Weldon Roberta G. Williams, MD, MACC, FAHA Ali Zaidi, MD

Partner ($250-$499) Anonymous (5) Mary O. Aaland, MD Carol Abbott Shirley A. Anderson Donita Atkins Nancy Bangel Beth Brickner, MD Stephen Crumb, DNP Antone M. Damas Jonathan and Jennifer Damashek Kathryn Dempsey Michelle M. DeRoo Urmi and Rajesh Desai Trang Dinh Mr. and Mrs. Howard Ebersman Mr. and Mrs. Jeff Ferguson Amy Fesmire Carol A. Gillis Karen Gresh

John Habib Mr. and Mrs. Charles Hart Susan J. Higle-Wise, Ed.S. Mr. and Mrs. Jeffrey Ishida Brian Janelle Johnson Logistics, LLC Debra Johnson W. Aaron Kay, MD Daryl Kleiman Julie A. Kovach, MD, FACC, FASE Gary Laterovian Sandra Louise MacKey Mr. and Mrs. Douglas McLellan Michael R. McMullan, MD Thomas and Marren Meehan Sharon Meyer James R. Murphy Daniela Neagu Diane Neff Theresa O’Leary James C. Perry, MD and Nicole K. Boramanand Mr. and Mrs. Michael Putnam Anne and Brian Reilly David W. Richards Charlene and Mark Rosenblatt, MD John and Jeannine Salamone Jeremy Salsman J. Gregory and Joan Sarfino Michael Silverglat Gale J. Skinner Alicia Smith Eric Sporkin Marion Wachtenheim Tracy Wacker Mr. and Mrs. Woody Weeks Tracy Williams William and Janice Wong Ann Wright The Wright-Jones Family

Friend ($100-$249) Anonymous (14) Mr. and Mrs. R. Achiro Jane T. Alfieri Diana L. Anderson Mr. and Mrs. Charles C. Anderson Mohammad Ashraf, MD Olive Avila Daniel Barnes and Elaine Wilson Terrsa Barous Barry Barth Thomas M. Bashore, MD Peter Beer Tammy Beerbower Laurie Graham Bennett Kate Benoit Adrienne Benson Mr. and Mrs. Frederick J. Beste III Kristen H. Billingsley Cynthia Binger Jeffrey J. Bishop Andrew Bissland Betsy Block Tzvi and Sareet Bluestone Wendy M. Book, MD Elizabeth S. Borman Mr. and Mrs. Dale Brunner Sandra Canepa-Swan and David Swan Tammy Carlos Claudia Carravetta Lloyd and Betty Cates Dana Chamberlain John and Cynthia Church Mr. and Mrs. Mike Cleary Mr. and Mrs. Brad Clowers

Jeff Coffin Mr. and Mrs. Howard Cohen Joyce Conoran Stephen C. Cook, MD, FACC Eugeania Cowe Marc F. Cymes Marie-France Cyr Steven Cyriac Margaret Damico Barbara and Brannon Darnell Margaret Davis Margaret Del Col Mr. and Mrs. Bruce Diamond Mr. and Mrs. Mark Dias Arturo Urista and Maria Diaz Dorothy J. Dickoff Jessica and Anthony DiGiovanni Alan W. Draper Lenore Duchnowski Phillip R. Dudley Ruth and Geoffrey Duffine Thomas Dunphy Seth D. Ellis Lavetta L. Evans Judith F. Fabiniak Jim Fantaski Helen Feldman-Goldstein Robert Fernie Jay Fiddelman Debbie Fiser Mark and Susan Foote Billy Freeland Jessica and Joshua Freely Mr. and Mrs. Wayne Frerichs Mr. and Mrs. John Frye Robert J. Furce Seana Gallagher Robert Galperin Mr. and Mrs. Ramon Garcia Bruce and Judy Geller Mr. and Mrs. Anthony Giancana David Giller Diego Gilsanz Jules Goldberg Laura L. Goldenschue Marlene and Michael Goodman Robert Grabel Sandra Snyder Grant Mike and Laurie Greenawalt Gary and Peri Greenberg Mr. and Mrs. Henry Greene David Gregg, MD The Guillaud Family Christina Gurnham Alvarez Robbie Harrell Jan Harris Barbara Hart Cynthia and Michael Hassan Angela and Tom Heigle Alexander Hildebrand Tuan Ho Nancy Hoffman and Conley Smith Mary Ann Holthausen Jaclyn Hourihan Richard Imamura Earl and Judith Imhoff Maureen Jepson Kelly M. Johnson Leroy Johnson Brigid Jones-Mook Harlan L. Joseph Paula Jovanov Christine Kaeser Martin and Cheryl Kahn Ronald J. Kanter, MD Mr. and Mrs. Richard Karlson Myra Karnes Shiva Kashanian, MD and Mohammad R. Khosravi, MD

Mr. and Mrs. Michael Kelley Mr. and Mrs. Stephen Klaber Ted and Mary Kay Klein Scott Klewer, MD Mara Koven-Gelman Miriam R. Krause James W. Larson Stephen Latin Beth Leahy-Fox Kathy Lew Mary Lewis David Lewis Layne Logue Claudia Long Martin and Polly Lougen, Jr. Teresa A. Lyle, RN, MN, CPNP Teresa and Greg MacClelland Lynn S. Machen William and Dale Major Katherine and Phillip Manger Rosanne Margraf Ric and Lori Martin Paul J. Mason Jordan Matthews Sabrina L. Maurer Mr. and Mrs. David Mayer Robin D. McCall Sally and John McCarthy Michael E. McConnell, MD Cherie and Martin McDermott Kim and Tom McKeon Barry and Wendy Meil Angela and Frank Melazzo Michael Melstad Nick Melvoin Christopher Memoli Linda Miller and Ben Miller Paula Miller Samuel C. Miller III Allen and Sandra Miller Mr. and Mrs. Pete Monchino Linda Montague Phillip Moore, MD Barbara Moore-Topazio Susan and Ted Moriak William Moskowitz Peter and Tina Murray Mr. and Mrs. Steve Nance Jo Ann Nieves, MSN, CPN, ARNP-BC Jo Ann and Paul Nivasabutr Luke O’Brien Kathryn and Clinton Osteen The Paganelli Family Sara and Scott Pate Janet Paul Ken Perkins-Gough Gary Pernick Alice Pernick Mr. and Mrs. Anthony Pettinato Vera Pflum Lance Polivy James Poovey Mr. and Mrs. Joseph Pottebaum Juanita Potts, RN Peggy Powers Rick Puder Michele Quintero Alexis Raymond Lynn Redd Jana Reid Mr. and Mrs. Timothy A. Reilly Joni Reilly Jack Reynolds Richard and Joy Richards Lisa Riggs Tina Rinaldi Mr. and Mrs. Charles Robinson Paul Rodrigues Robert D. Ross Todd Roth Ronen Rozenblum, Ph.D., MPH

SUPPORTERS (INDIVIDUALS)

Thank you to all of ACHA’s donors in 2016. Below is a list of our donors who gave $100 and more.

Bradley Rubin Sheila Salmon Jacqueline Savran Mr. and Mrs. Paul Scheuerman Mary Elizabeth Schlater Al and Sue Schlesinger Teresa Scilipote Susan Scott Eric Shapiro Jennifer Shaughnessy Bruce and Linda Sherbow Oleg Shik Nishant Shrikhande Neal Siegel Lynn Coletta Simko Jeffrey and Mary Sisson Jason Sizemore Mr. and Mrs. Russell Smith John Spain

Kristine F. Spoth Somkid Sridaromont, MD John and June Stolnis Allison Teger, M.Ed., LMHC LeAnn and Mitch Teixeira Randy, Liz, and Shelby Thomas Stephen Thompson Peter and Sam Thomson Steven Tomcavage Mr. and Mrs. Enrico Topazio Gerald Tweedy Gruschen Veldtman, FRCP, MBChB Richard Vines Ted Wagner Winifred Waldron Kimberly Wallace Dr. B. Rush Waller, III, MD Barbara Ware

Christine Watts-Johnson Mr. and Mrs. Peter Weilnau Steve and Susan Wilson Jennifer Witucki Mark Wolf Joyce Wood Ken Woodhouse Andrew Woodward Melissa Worrell Bill and Suzanne Worrell Robert and Sharon Wuggazer Stacey and Chris Yetsko Mr. and Mrs. Norman A. Young Connie Youngers LeeAnne Zaroski

We make every effort to present complete and accurate donor information. Please advise us of any errors or omissions.

AdultCongenitalHeartAssociation