Congenital Heart Legislative Conference Liaison Capitol Hill, Washington DC February 1-2, 2016

Schedule of Events

Monday, February 1 9:00 am – 10:30 am Registration Foyer

10:30 am Welcome Amy Basken  ACHA Glenn Tringali, National Executive Director Metropolitan Room  CHF William Foley, Executive Director  PCHA David Kasnic, Executive Director

10:50 am Key Note – The Power of the Patient Voice Moderator: Paula Miller 10:50 am -11:10 am  Adult Perspective Rick Puder, Patient Advocate Metropolitan Room 11:10 am -11:30 am  Pediatric Perspective Jackson Radandt, Patient Advocate

11:30am-12:30pm Lunch, Meet and Greet Metropolitan Room

12:30 pm Congenital Heart Policy Moderator: Amy Basken 12:30 pm -1:00 pm  CHD Research Advances from NIH Kristin M. Burns, MD Metropolitan Room Sara K. Pasquali, MD, MHS 1:00 pm – 1:30 pm  Public Health Surveillance of CHD Jill Glidewell, APRN, MSN, MPH 1:30 pm -1:45pm Carol J. Rowland Hogue, PhD, MPH

 The Importance of Awareness Michelle Gurvitz, MD, MS

1:45 pm – 2:00 pm Break

2:00 pm – 2:45 pm Advocacy and Congenital Heart Disease Panel Moderator: Paula Miller  The Current Climate Amy Basken Metropolitan Room  Our “Ask” Scott Leezer, The Federal Group  Building Relationships Erika Miller, Cavarocchi, Ruscio, Dennis

2:45 pm -2:55 pm Break

2:55 pm Tools and Training 2:55 pm – 3:55 pm Breakout A: (choose 1)  Meeting Etiquette / Telling Your Story* Amy Basken Metropolitan Room  Empowering the Youth Meredith Atkinson, Matthew Wright Hub/Grid Room  Digging Deeper: Panel Discussion with CDC/NIH Moderator: Paula Miller Hill Room Jill Glidewell, APRN, MSN, MPH Pam Costa, MA Carol J. Rowland Hogue, PhD, MPH Kristin M. Burns, MD Sara K. Pasquali, MD, MHS

3:55 pm – 4:15 pm Breakout B: Policy Keynote: Kristin Seum, Legislative Counsel Metropolitan Room  Policy Keynote Office of Congressman Gus Bilirakis Meredith Atkinson, Matthew Wright Hub/Grid Room  Empowering the Youth (continued) Tori Smith, Jennifer DeBouver, Erica Sood, PhD Hill Room  Empowering Those Who Have Lost Loved Ones

*New advocates are strongly encouraged to attend this breakout

4:25 pm Closing/What to expect tomorrow Amy Basken Metropolitan Room

Reception 5:45 pm Registration Open Metropolitan Room

6:00 pm Welcome and Introductions - Legislator Recognition Paula Miller/Amy Basken Metropolitan Room

9:00 pm Out the door! Go to bed early! Congenital Heart Legislative Conference 2016

Schedule of Events (con’t)

Tuesday, February 2 6:45-7:30 am Breakfast Metropolitan Room

7:30 am Welcome and Review Amy Basken/Paula Miller Metropolitan Room

7:45am Distribution and explanation of schedules Cavarocchi, Ruscio, Dennis Metropolitan Room Preparing for your meetings  Role Play Example  Practicing with your team

9:30 am -4:30 pm Hill Visits Unite Room  Hospitality Room will remain available (2nd Floor) throughout the day at the Liaison Hotel

4:30-6:00 pm Wrap-up reception Amy Basken/Paula Miller Hub/Grid Room

Congenital Heart Legislative Conference 2016

Important On-Site Numbers

Liaison Capitol Hill 15 New Jersey Avenue Northwest Washington, DC 20001 (202) 638-1616

Organizational Staff Numbers: Adult Congenital Heart Association (ACHA): Paula Miller (901) 581-1349 Children’s Heart Foundation (CHF) Bill Foley (773) 315-5380 Pediatric Congenital Heart Association Amy Basken (608) 370-3739 * Please consider texting to expedite response

Transportation Numbers Washington National Airport (DCA): 703-417-8000 Washington Dulles International Airport (IAD): 703-572-2700 Baltimore-Washington International Airport (BWI): 410-859-7111 Union Station: 202-289-1908 Metro Information Line: 202-637-7000

IN CASE OF MEDICAL EMERGENCY PLEASE CALL: 911 For pediatric and adult congenital heart care: Children’s National Medical Center and Washington Hospital Center: 202-476-5000

Congenital Heart Legislative Conference 2016

Using Social Media during the Legislative Conference #CHDAdvocacy

Show the CHD community, and everyone who can’t be here with us today, what we are doing for the Congenital Heart Legislative Conference! Thanks in advance for helping us out. Here are a few ways to share your experiences as they happen:

Tweet about your time in D.C. Use hashtag #CHDAdvocacy Twitter Handles: @ACHA_Heart @theCHF @PCHA_CHD

Share your experiences on Facebook. Be sure to tag: Adult Congenital Heart Association Children’s Heart Foundation Pediatric Congenital Heart Foundation

Instagram Fan? Hashtag #CHDAdvocacy

Don’t forget to include your Members of Congress! You can also tweet pictures and thank you notes to them (tagging with #CHDAdvocacy) and post to their Facebook walls or tag them in your posts.

Congenital Heart Legislative Conference 2016

Story Worksheet

Here are some tips for developing your story:  Keep it short – 30 seconds. Time your story to make sure it is not too long.  Be clear - use plain words and avoid medical jargon.  Speak from the heart and talk about your experience.  Be accurate, honest and persuasive.  Avoid relying on statistics.  Be polite, respectful, patient and grateful.  Practice, practice, practice. Tell your story to others and notice their reactions. After each practice, edit what you liked, and what you didn't like.

My Story-

Name:

Introduction:

Key Message:

Request:

Other things that you think are important and just can’t fit in:

Congenital Heart Legislative Conference 2016

Political Decorum Policy

Being on Capitol Hill is likely to remind you of everything that you love and hate about the current administration and policies. Please remember that our Legislative Conference group will include people of all political persuasions. This can be a wonderful opportunity to meet and learn from people who see the world differently than you do. Please remember the following during your Legislative Conference experience:

 Don’t make statements that assume that others share your political views.

 Be respectful when talking about all political leaders. Your political villain is likely to be someone else’s political hero.

 Stay focused on congenital heart issues. This is why we are here and what we all agree on. Divisive conversations will take away from our ability to forge a unified message on CHD needs.

IT IS STRICTLY FORBIDDEN TO RAISE ISSUES UNRELATED TO CHD IN YOUR MEETING(S) WITH YOUR LAWMAKER(S). You may not discuss issues such as the upcoming elections; health care reform; the wars; the economy; the budget; the Supreme Court; immigration; unemployment; stem cell research; abortion; etc. Remarks should focus exclusively on the needs and challenges of the congenital heart community, and the need for more research and health surveillance in CHD, as called for by the Congenital Heart Futures Act.

Legislative Conference 2015 Pledge

I, ______(print name) in order to be an effective advocate, agree to comply with the directives of Legislative Conference 2015.

I pledge to stay focused on the Legislative Conference key message points surrounding

Increased funding of research and data collection

I will strive to relate my story to these key points, and in doing so, respecting the political differences of others.

______Signed

Congenital Heart Legislative Conference 2016

Capitol Complex Map

Congenital Heart Legislative Conference 2016

Dining Areas on Capitol Hill

You will find several places to eat in the Senate Office Buildings during your visit. The following restaurants are open to the public:

 Russell Carry-Out – Open 7:30 AM to 5:00 PM, Monday through Friday (located in the Russell Building Basement, NW corner). Call (202) 224-8083 for more information.

 Dirksen North Servery – Open 7:30 AM to 3:00 PM, Monday through Friday (located in the Dirksen Building Basement, NW corner). Call (202) 224-2263 for more information.

 Dirksen South Buffet – Open 11:30 AM to 2:30 PM, Monday through Friday (located in the Dirksen Basement, South Side). Call (202) 224-4249 for more information.

 Dirksen South Convenience – Open from 8:00 AM to 4:00 PM, Monday through Friday (located in the Dirksen Basement South). Call (202) 228-2810 for more information.

 The Hart Senate Chef – Open 8:00 AM to 6:30 PM, Monday through Friday (located in the Dirksen/Hart Ground Floor Connecting Corridor). Call (202) 224-4587 for more information.

Restaurants Open to the Public in the House Office Buildings:

 Cannon Carry-Out – Open 7:30 AM to 4:00 PM, Monday through Friday. Call (202) 225-6230 for more information.

 Longworth Food Court – Open 7:30 AM to 2:30 PM, Monday through Friday (located in the Longworth Building Basement). Call (202) 225-0878 for more information.

 Rayburn Cafeteria – Open 7:30 AM to 2:30 PM, Monday through Friday. Call (202) 225-7109 for more information.

 Rayburn Pizza Plus – Open from 11:00 AM to 7:00 PM, Monday through Friday. Call (202) 225- 3504 for more information.

 Ford Cafeteria – Open 7:00 AM to 3:00 PM, Monday through Friday (located in the Ford Building, first floor). Call (202) 225-2238 for more information.

 Ford Carry-Out – Open 7:00 AM to 4:00 PM, Monday through Friday (located in the Ford Building, first floor). Call (202) 225-2238 for more information.

There is also a Cafeteria located in the Capitol Visitor’s Center.

Congenital Heart Legislative Conference 2016

We’d like to thank our Sponsors:

Congenital Heart Legislative Conference 2016

More About Your Hosts:

The Adult Congenital Heart Association (ACHA) is a national not-for-profit organization dedicated to improving the quality of life and extending the lives of adults with congenital heart defects (CHD). ACHA serves and supports the more than one million adults with congenital heart defects, their families and the medical community—working with them to address the unmet needs of the long-term survivors of congenital heart defects through education, outreach, advocacy, and promotion of ACHD research.

For more information: www.achaheart.org

Motivated by the needs of our children, the goal of The Children’s Heart Foundation is to bring health, hope and happiness to children impacted by congenital heart defects, the number one birth defect in the United States. We accomplish this goal by funding the most promising research to advance the diagnosis, treatment and prevention of congenital heart defects.

For more information: www.childrensheartfoundation.org

The Pediatric Congenital Heart Association’s Mission is simple, to “Conquer CHD.” We are accomplishing this through collaboration with patients, parents, providers, and partner organizations in order to effectively advocate for improved quality and outcomes through CHD education, research and awareness. PCHA empowers patients and families by providing them with the educational resources they need to achieve the highest quality care available to them; amplifies the voice of the CHD community informing policymakers of the significant public health burden related to CHD; and partners with federal agencies, medical professionals and investigators to promote patient focused research.

For more information: www.conqueringchd.org

Congenital Heart Legislative Conference 2016

Conference Speakers

We’d like to extend a huge thank you to our tremendous speakers who are sharing their time, experience and expertise with us, today.

Kristin M. Burns, M.D. – Medical Officer at the National Heart, Lung, and Blood Institute of the National Institutes of Health (NIH). She manages a portfolio of grants in basic and clinical research in congenital heart disease and pediatric cardiology. She leads the Sudden Cardiac Death in the Young Registry, a collaboration between NIH and the CDC to increase understanding of the epidemiology and causes of sudden cardiac death in children and young adults in the United States. She also helps to oversee the Pediatric Heart Network clinical research program and the Bench to Bassinet Program, which performs basic and translational research on heart development and the genetics of congenital heart disease. Dr. Burns is also a practicing pediatric cardiologist at the Children’s National Medical Center in Washington, D.C. She sees patients in outpatient cardiology clinics, cares for hospitalized patients with heart disease, and advises the cardiac intensive care unit team on cardiology- related issues in medical and post-surgical patients.

Pam Costa, MA – Pam’s career at CDC has been at the National Center on Birth Defects and Developmental Disabilities. In 2001, she started with the Early Hearing Detection and Intervention Program. She served as Acting Division Director for the Division of Human Development and Disability for 2 years, and then joined the Birth Defects Branch as the Surveillance Team Lead in 2011. Prior to CDC, she was a Program Manager for the Department of Health and Senior Services in New Jersey, responsible for newborn screening follow-up, birth defects surveillance, and newborn hearing screening. She also worked for nearly 12 years as a sampling statistician for two survey research firms before her work in public health.

Jill Glidewell, APRN, MSN, MPH – Health Scientist with the National Centers on Birth Defects and Developmental Disabilities. Jill received a Master of Science in Nursing and Master of Public Health from the University of South Carolina. Prior to transitioning to a career in Public Health, Jill worked for several years as a pediatric/neonatal intensive care unit nurse. She has been with the CDC for 6 years.

Michelle Gurvitz, MD – Assistant professor of pediatrics at Harvard Medical School and a staff cardiologist with the Boston Adult Congenital Heart program at Children’s Hospital Boston and Brigham and Women’s Hospital. Dr. Gurvitz is board certified in pediatrics, internal medicine and pediatric cardiology and has a Master’s degree in Health Services Research. Currently, Dr. Gurvitz divides her time between research and clinical care. Her research is primarily in areas of health services, long-term outcomes, and quality of care. She is a founding member of the Alliance for Adult Research in Congenital Cardiology and a member of the adult congenital committees of the American Heart Association and the American College of Cardiology. Dr. Gurvitz also maintains an active clinical practice seeing adults with congenital heart disease.

Carol J. Rowland Hogue, Ph.D., M.P.H. – Professor of Epidemiology and Jules & Uldeen Terry Professor of Maternal and Child Health. She is co-Investigator of Emory University’s Cooperative Agreement with the National Center for Birth Defects and Developmental Disabilities focused on improving lifespan health and healthcare for persons born with congenital heart defects. Prior to coming to Emory, Dr. Hogue was Director of the Division of Reproductive Health, CDC, where she initiated many of the current CDC reproductive health programs, including the Pregnancy Risk Assessment Monitoring System (PRAMS), the National Pregnancy Mortality Surveillance System, and the National Infant Mortality Surveillance (NIMS) project that inspired the national and state-level development and use of linked birth and death records. She has been President of the Society for Epidemiologic Research and the American College of Epidemiology, and Chair of the Regional Advisory Panel for the Americas of the World Health Organization Human Reproduction Programme. Among other honors, she is recipient of the U.S. MCH Coalition’s National Effective Practice Award and UNC’s Department of Epidemiology Herman A. Tyroler Distinguished Alumni Award.

Congenital Heart Legislative Conference 2016

Rick Puder – Divides his time between audiences and medical professionals. While his principle career is training and public speaking, he well understands affairs of the heart. He was born in 1958 with a coarctation of the aorta and survived heart surgeries at age 4 and 13. After being advised in 2009 he may require yet another surgery, Mr. Puder began passionately volunteering his talents as an ACHA Heart to Heart Ambassador to provide others with same hope, support, and optimism they gave him when he faced his own challenges. Mr. Puder is an experienced public speaker and trainer who has represented various major retailers for more than 30 years. He founded the training function at a national retailer where he uses consumer research to better understand the needs of both customers and store associates. Mr. Puder also works with career-minded professionals to overcome the fear of speaking in public. He holds Bachelor’s and Master’s degrees in business administration with concentrations in marketing and economics.

Jackson (Jack) Radandt – Born on April 15, 2001 with hypoplastic left heart syndrome (HLHS). He had three stages of palliative reconstruction by age three, and had an active childhood that included excellent school performance and participation in sports. At age eleven, he developed rapidly progressive heart failure that failed conventional therapies leaving replacement therapy his only option. While on the transplant list, Jack’s heart failure continued to progress necessitating support with a ventricular assist device (VAD). Eventually, Jack received his heart transplant in May 2013, and has returned to an active life. Jack’s journey through staged palliation for HLHS spanned participation in several innovations in the care congenital heart disease (CHD). Specifically, he was one of the initial children to participate in the Home Monitoring Program for high-risk infants with shunt dependent congenital heart disease. Findings from this program developed by Children’s Hospital of Wisconsin have led to improved survival at many centers nationally and internationally. Options for Jack when it was determined he needed mechanical circulatory support as a bridge to transplant were limited. At that time, the recently FDA approved Heartware VAD (HVAD) had not been studied in children with single ventricle disease. Jack was the first child with HLHS in the USA to have the HVAD implanted and subsequently go home with the device. His experience with the HVAD led to a case report in the Annals of Thoracic Surgery. Jack has been an important voice of CHD by sharing his journey at local and national conferences. Notably, he is the youngest presenter in the history of the American College of Cardiology.

Sara K. Pasquali, MD, MHS – Associate Professor in the Division of Pediatric Cardiology at the University of Michigan C.S. Mott Children’s Hospital, and a faculty member at the Center for Healthcare Outcomes & Policy. She Co-Directs the Michigan Congenital Heart Outcomes Research and Discovery (M-CHORD) Program and the Fellow Research Program within the Michigan Congenital Heart Center. Dr. Pasquali’s research, supported by NHLBI, focuses on evaluation of outcomes and quality in children undergoing heart surgery. She has published more than 90 peer-reviewed manuscripts in this area, and is an elected member of the Society for Pediatric Research, and the Congenital Heart Surgeons Society. Dr. Pasquali leads the Health Services and Outcomes Collaboratory within the Pediatric Heart Network, and directs the Pediatric Cardiac Critical Care Consortium Data Coordinating Center. She is a member of the Society of Thoracic Surgeons Congenital Heart Surgery Database Taskforce, Editorial Board of Circulation: Cardiovascular Quality and Outcomes, and the American Heart Association Executive Database Steering Committee.

Kristin Seum, Esq. – Legislative Counsel, Congressman Bilirakis. Kristin grew up in Arlington, VA and moved to North Carolina in 2006 to attend college and then later, law school, at Elon University. After several internship experiences on Capitol Hill, including one with Congressman Howard Coble and one with the Energy and Commerce Committee, she decided to pursue public policy. Kristin joined the office of Congressman Gus Bilirakis in January of 2015 as the Legislative Correspondent and was promoted to Legislative Counsel in April of that year. She currently handles several legislative issues for the Congressman, including public health, which led to her involvement with the Congenital Heart Futures Reauthorization Act. She is an Emerging Leader in the Stennis Congressional Staff Leadership Program and a member of the Women’s Congressional Staff Association.

Congenital Heart Legislative Conference 2016

Legislative Champions

This list indicates those legislators who have expressed willingness to support CHD issues.

Senate House Jess Session (R-AL) + Raul Grijavla (D-AZ 3) ♥ Mike Quigley (D-IL 5) Michael Bennet (D-CO) + Rick Crawford (R-AR 1)  (R-IN 8) + Mazie Hirono (D-HI) ♥ (R-AR 2) ♥+ James McGovern (D-MA 2) + Richard Durbin (D-IL)** + (D-CA 3) + Niki Tsongas ( D-MA 3) + Chuck Grassley (R-IA) (D-CA 13)**  (R-MI 7) + Edward Markey (D-MA)  (D-CA 15) + John Conyers, Jr (D-MI 13) Roy Blunt (R-MO)** ♥+ (D CA-28) + Timothy Walz (D-MN 1) Thad Cochran (R-MS)** + (D-CA 30)** + Rick Nolan (D-MN 8) + Sherrod Brown (D-OH)** + Mimi Walters (R-CA45) + Wm. "Lacy" Clay, Jr (D-MO 1) Robert Casey (D-PA)** ♥ Jared Polis (D-CO 2) + (R-MO 3) Sheldon Whitehouse (D-RI)** + Mike Coffman (R-CO 6) + Richard Hudson (R-NC 8) Mark Warner (D-VA) ♥+ (D-DC)** Leonard Lance (R-NJ 7) + Tammy Baldwin (D-WI)** Jeff Miller (R-FL 1)** + Yvett Clarke (D-NY 9) ♥ (R-FL 3) ♥+ (D-NY 12) ♥ (R-FL 4)** + Charles Rangel (D-NY 13) ♥ (D-FL 5)** ♥+ Richard Hanna (R-NY 22) ♥ (R-FL 8)** ♥ (D-OR 1) ♥+ Gus Bilirakis (R-FL 12)** ♥ (D-OR 3) ♥ (R-FL 14) ♥ Joseph Pitts (R-PA 16) ♥ (R-FL 16) + Matthew Cartwright (D-PA 17) (D-FL 23)** Marsha Blackburn (R-TN 7) Mario Diaz-Balart (R-FL 25)** ♥ (D-TN 9)** Ileana Ros-Lehtinen (R-FL 27)** + Sheila Jackson-Lee (D-TX 18)** John Lewis (D-GA 5)**  (R-VA 9) ♥ Austin Scott (R-GA 8) Gerald Connolly (D-VA 11)** Madeleine Bordallo (D-Guam)** + (D- Virgin Islands) ♥ + Dave Loebsack (D-IA 2)** ♥ + Marc Pocan (D-WI 2)

♥ Member of the Congressional Congenital Heart Caucus ♥ Caucus Chairperson **Co-Sponsors of the original Congenital Heart Futures Act **Author of the Congenital Heart Futures Act + Signed 2015 Dear Colleague Letter + Author 2015 Dear Colleague Letter Co-Sponsored Congenital Heart Futures Reauthorization Act Author of Congenital Heart Futures Reauthorization Act (Updated January 1/19/16)

Congenital Heart Legislative Conference 2016

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Congenital Heart Legislative Conference 2016

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