What’s Inside

Welcome 3

Conference Schedule 4 - 5

Technical Requirements 6 - 7

5 Tips to Be Prepared 8

The Asks 9

Researching Your Lawmakers 10 - 11

Tips for Successful Meetings 12

Advocacy for Kids 13

Thank You! 13

Welcome to Conquering CHD’s 2021 Advocacy Conference

Dear Advocate, Your story matters and sharing your journey with your lawmakers is an important part of ongoing advocacy activities. Our hope is that you have a wonderful experience! Although we are not meeting in-person this year, please look through this packet carefully. You will find the full agenda, technical requirements for virtual meetings, information about researching your lawmakers’ platforms, sharing your story, and the 5 things you can do right now to prepare for the conference. After reviewing, please email advocacy@conqueringchd.org with any questions or concerns. Together, we are #ConqueringCHD! “See you” soon,

Amy Amy Basken Senior Director of Programs, Conquering CHD

Conference Schedule

HEALTH DISPARITIES MEETING

*All times listed are Eastern

Sunday, February 28th 1:00p - 1:10p Welcome and Introduction David Kasnic, Executive Director 1:10p - 1:20p Health Disparities – Why it Matters Ram Kumar Subramanyan, MD 1:20p - 2:20p Barriers Affecting ACHD Care Moderator: Roberta Williams, MD

Wayne Franklin, MD Stephanie Fuller, MD Jennifer Iguina, Parent Keila Lopez, MD Sasha Opotowsky, MD Roslyn Rivera RN, BSN, CPN-BC Jennifer Weiner, Living with CHD

2:20p - 2:30p Break 2:30p - 3:30p Implicit vs Explicit Bias Moderator: Rita Higgins, RN

Kiona Allen, MD Belen Altuve, Living with CHD Sal Ginde, MD Veronica Gunn, MD Shuntae Williams, PhD, Parent

3:30p - 3:40p Break 3:40p - 4:40p Access to Care vs Access to Quality

Care Moderator: Brett Anderson, MD

Elijah Bolin, MD Joseph Burns, MD, Living with CHD Shab Peyvandi, MD Carol Raimondi, Living with CHD Tori Smith, Parent Ram Kumar Subramanyan, MD

4:40p - 4:50p Break 4:50p – 5:50p

Moving from Protocol to Person: Addressing Cultural Differences

Moderator: Wendy Nembhard, PhD Reshawn Ingram, Parent Adrienne Kovacs, PhD Swati Kunduri, PhD, Parent Nicolas Madsen, MD Erica Sood, PhD Andrew VanBergen, MD Ken Woodhouse, Living with CHD

5:50p - 6:00p Wrap Up and Next Steps Amy Basken, Senior Director of Programs

Conference Schedule

ADVOCACY CONFERENCE

*All times listed are Eastern

Monday, March 1st 1:00p - 1:15p Welcome

Conquering CHD Intro David Kasnic, Executive Director Amy Basken, Senior Director of Programs

1:15p - 1:45p History of CHD in Washington, D.C.

Amy Basken, Senior Director of Programs

1:45p - 2:00p Conquering CHD Jeopardy! Valerie King, PACL, CMHFA 2:00p - 2:10p Break 2:10p - 2:20p Your Voice Matters Rebeka Acosta, BCPA, Education Director 2:20p - 2:55p Advocacy Impact Panel

Moderator: Rebeka Acosta, BCPA, Education Director

Ryan Moore, Teen Patient Letitia Aloysius, Adult Patient Amit Shah, Parent of Patient Cecilia Goudanis-Huebner, Bereaved Spouse

2:55p - 3:15p What to Expect During Your Virtual Visits: Right, Wrong, and Everything In-Between

Valerie King, PACL, CMHFA Conquering CHD Advocacy Team

3:15p - 3:25p Break 3:25p - 3:55p What to Expect During

Your Visit: The Legislative Staff Perspective

Moderator: Valerie King, PACL, CMHFA ShayneWoods,SeniorPolicyAdvisorRepresentativeGusBilirakis (R-FL)

Max Kanner, Health Policy Advisor Senator Richard Durbin (D-IL)

Erin Dugan, Legislative Assistant Senator Tammy Baldwin(D-WI)

3:55p - 4:00p Wrap-Up and Reminders Amy Basken, Senior Director of Programs 4:00p - 5:30p Preparation for Visits

Team Training and Practice Soapbox Consulting Conquering CHD Advocacy Team

Tuesday, March 2nd 8:00a - 8:30a Inspirational Kick-Off Melanie Toth, Community Director 8:30a - 5:00p Office Hours Conquering CHD Staff Various Times

Virtual Legislative Visits Virtual Offices of Your Senators and Representatives

5:00p Legislative Visit Reports Due

Technical Requirements Health Disparities Meeting

Sunday, February 28th at 10a PT / 11a MT / 12p CT / 1p ET Please log on at least 5 minutes early, all sessions will start and end on time Hosted on Zoom platform

You will need to join the event using the Zoom computer application or through a web browser. The mobile phone or tablet app may not correctly display all meeting functions. If you don’t already have one, you can create an account at zoom.us and download Zoom for Mac or PC at https://zoom.us/download. First time Zoomers can find resources at https://support.zoom.us/hc/en-us/categories/200101697. Zoom Meeting Details Webinar ID: 997 2496 3918 Passcode: 272306 https://conqueringchd.zoom.us/j/99724963918?pwd=ZW15WHVjaFRPNktvYng1dXBJU3dXZz09 Advocacy Conference

Monday, March 1st at 10a PT / 11a MT / 12p CT / 1p ET Please log on at least 5 minutes early, all sessions will start and end on time Hosted on Zoom platform

Zoom Meeting Details Webinar ID: 950 6379 9862 Passcode: 144790 https://conqueringchd.zoom.us/j/95063799862?pwd=UC9OMCt1Z1FBUHY2cTc3M2dVZGNYdz09

Advocate Team Rehearsal by States (Soapbox Consulting)

Monday, March 1st at 1p PT / 2p MT / 3p CT / 4p ET Hosted on GoTo Meetings platform

You can download the desktop version of GoTo Meetings and find technical tips here. Meeting links will be sent to attendees prior to the conference by the Soapbox Consulting team.

Technical Requirements Advocacy Conference Day 2

Tuesday, March 2nd Kick-off message available for viewing on Advocacy Conference webpage

https://www.conqueringchd.org/involvement/advocacy2021/ All virtual legislative visits held on GoTo Meetings platform Legislative visit links will be sent by the Soapbox Consulting team

Technical Dos and Donts Please log-in at least 5 minutes early. All sessions will start and end on time. Attendees are muted and off camera when joining the event. If you speak during the event, please make sure there is no background noise or visual distractions in view of your camera. Attendees should use the Q&A feature on Zoom to post questions or comments to the Panelists/Presenters/Conquering CHD Staff. The Chat feature will not be monitored. Do not respond directly to questions entered by other participants in the Zoom Q&A feature. Please allow Event Organizers and Conquering CHD staff to appropriately answer questions or pose to the presenting panelists. The Conference is a live, virtual event and is being recorded for future viewing. Your name and/or video will be included in the recording if you speak during the event. Review the events’ full agenda and familiarize yourself with the topics being presented. Have questions ready!

Our Top 5 Tips for Advocacy Conference No need for comfortable walking shoes this year! J 1. Watch the pre-conference video. Available in the email that contained this packet. 2. Know “the asks.” It is important that you stay focused on the key issues we will be covering. We

know there are so many more things to talk about, but when we all share the same message, it has a much bigger impact. We will review the messaging in depth during the conference.

3. Practice telling your story. Your story is what moves your lawmakers into action, but you only

have a few minutes to get your point across. You need to practice being brief and it can be difficult, we know! Here’s a few things to think about as you practice before the conference:

Be clear. Use simple words rather than medical terms. The people you meet will likely not be familiar with congenital heart disease.

Be accurate. Your story as it really happened is powerful. Be brief. Plan on 2-3 minutes to tell your story and make an impact. If you are allowed

more time you can always share more. Be polite. The most important part of advocacy is building relationships with your

legislators and their staff. Even if you don’t agree on things, it is important to focus on the common ground and always be grateful.

4. Know the basics about your Senators and Representatives. We encourage you to learn a few things that might help you better advocate during your meeting. See “Researching Your Lawmakers” in this packet. It is possible that your legislator may not be able to attend your meeting in person and instead, you will meet with his or her staff. The role of the staff members is to become the issue experts and help inform the views of the legislators. Building strong positive relationships with the staff is key.

5. Get excited and ask questions! If this is your first time, you may be a little nervous, and that is

totally normal. But those who have participated before will reassure you that this experience will be one to remember! You’ll make new friends, celebrate with old friends, learn more about CHD advocacy, and share your story in a way that truly matters. Don’t hesitate to email advocacy@conqueringchd.org with any questions you may have. We want you to have the best experience possible!

The Asks

Researching Your Lawmakers Knowing your audience is key when sharing your story and advocating for the CHD community. A little research can go a long way in building those relationships! Step 1: Find your Senators at https://www.senate.gov/ and Representatives at https://www.house.gov/. Step 2: Review your lawmaker’s websites to learn about their personal and professional interests, as well as their political platforms. Consider these questions when researching:

What healthcare legislation is most important to them?

Have they been involved in CHD legislation before?

Have they hosted healthcare events in their local communities?

Have they issued statements or press releases about healthcare?

Do you have an interest in common?

Do you participate in local/regional activities supported by the lawmaker?

Who are their healthcare staffers?

Have you met with this office in prior years?

Share memories linking you to each other as part of your relationship building!

Step 3: Be sure to check the list of lawmakers who sponsored the Congenital Heart Futures Act (2017) and the list of Representatives who are members of the Congenital Heart Caucus. Congenital Heart Futures Reauthorization Act 2017 (S.477) Supporters List *Original Sponsor

Baldwin, Tammy [D-WI] Brown, Sherrod [D-OH] Casey, Robert [D-PA] Coons, Christopher [D-DE] Durbin, Richard [D-IL]* Klobuchar, Amy [D-MN]

Nelson, Bill [D-FL] Stabenow, Debbie [D-MI] Whitehouse, Sheldon [D-RI] Wicker, Roger [R-MS] Young, Todd [R-IN]

Researching Your Lawmakers Congenital Heart Futures Reauthorization Act 2017 (H.R.1222) Supporters List *Original Sponsor

Abraham, Ralph [R-LA-5] Bilirakis, Gus [R-FL-12]* Bost, Mike [R-IL-12] Cardenas, Tony [D-CA-29] Collins, Chris [R-NY-27] Connolly, Gerald [D-VA-11] Ellison, Keith [D-MN-5] Evans, Dwight [D-PA-2] Fitzpatrick, Brian [R-PA-8] Griffith, H. Morgan [R-VA-9] Guthrie, Brett [R-KY-2] Loebsack, David [D-IA-2] McMorris, Cathy [R-WA-5] Meehan, Patrick [R-PA-7] Moulton, Seth [D-MA-6]

Mullin, Mark [R-OK-2] Murphy, Stephanie [D-FL-7] Nolan, Richard [D-MN-8] Norton, Eleanor [D-DC-At Large] Pocan, Mark [D-WI-2] Ros-Lehtinen, Ileana [R-FL-27] Schiff, Adam [D-CA-28]* Sessions, Pete [R-TX-32] Soto, Darren [D-FL-9] Stivers, Steve [R-OH-15] Swalwell, Eric [D-CA-15] Velazquez, Nydia [D-NY-7] Walberg, Tim [R-MI-7] Webster, Daniel [R-FL-11]

Congenital Heart Caucus (House of Representatives only) *Chairs

Balderson, Troy [R-OH-12] Barr, Andy [R-KY-6] Bilirakis, Gus [R-FL-12]* Bonamici, Suzanne [D-OR-1] Blumenauer, Earl [D-OR-3] Bost, Mike [R-IL-12] Buchanan, Vern [R-FL-16] Castor, Kathy [D-FL-14] Chabot, Steve [R-OH-1] Cohen, Steve [D-TN-9] Connolly, Gerald [D-VA-11] Cooper, Jim [D-TN-5] Davis, Rodney [R-IL-13] Fitzpatrick, Brian [R-PA-1] Foster, Bill [D-IL-11] Grothman, Glenn [R-WI-6] Hill, J. French [R-AR-2] Himes, James [D-CT-4]

Krishnamoorthi, Raja [D-IL-8] Latta, Robert [R-OH-5] Luetkemeyer, Blaine [R-MO-3] Maloney, Carolyn [D-NY-12] McGovern, James [D-MA-2] Norton, Eleanor Holmes [D-DC] Pingree, Chellie [D-ME-1] Pocan, Mark [D-WI-2] Posey, Bill [R-FL-8] Quigley, Mike [D-IL-5] Rice, Kathleen [D-NY-4] Rochester, Lisa Blunt [D-DE] Rouzer, David [R-NC-7] Schiff, Adam [D-CA-28]* Scott, Austin [R-GA-8] Soto, Darren [D-FL-9] Wexton, Jennifer [D-VA-10]

Tips for Successful Meetings

Your training during the conference will include a review of key things to remember for a great meeting. You will be working with other advocates as a team and there will be ample time to practice introductions, key talking points, and sharing your story.

These meetings are about building relationships. By sharing your story, you can move your Members of Congress to take action on key issues. Every issue relating to congenital heart disease has been pushed across the finish line by stories from patients, families, clinicians, and supporters like you.

It is very important to stay on topic. Some small talk is acceptable but be sure to bring it back to the key issues. It is easy to get lost in telling your story - keep it brief and tie it in to the key issues. DO NOT discuss other political topics outside of our key issues, as it greatly reduces the impact of your meeting. Remember, you are one advocate in a larger community today, and our impact is greater when we share the same message to all lawmakers. Teamwork makes the dream work!

Dress to impress…on top at least. First impressions matter, and you should make the best impression possible during the meetings with your Legislators and their staff.

Advocacy doesn’t end when the meeting is over. In fact, you’ve only just begun! We will ask you to share your experience through an electronic feedback form. Let us know if your Member agreed to take action, if there were any questions that need answers, or any other urgent follow-up we can help with.

Continue the conversation with your lawmakers and their staff. You will receive the business cards of the staff members you meet with and this is your golden ticket. We encourage you to send a thank you email as soon as possible after your visits. You can also follow-up throughout the year providing them updates on key issues, passing along articles of CHD in the news, or fun experiences you are having #ConqueringCHD.

Even though you will be meeting with your lawmakers or their staff virtually, first impressions matter! Sit up straight, speak clearly, and look into the camera. Be presentable, wear business clothes on top (and maybe some fun pajama pants on the bottom). Make sure the area in view of your computer camera is clear or consider using a simple virtual background.

A Conquering CHD virtual background is available for download:

www.conqueringchd.org/wp-content/uploads/2021/01/Advocacy-Conference-Zoom-Background.png

Advocacy for Kids Even though we cannot be in person this year, there is still some fun stuff coming your way. Practice telling your story, learn about how our government works, and how you can help #ConquerCHD! You won’t want to miss Echo the Owl’s message and quiz game show! All junior advocate materials are available on the conference website: https://www.conqueringchd.org/involvement/advocacy2021/. NOTE: Junior advocate materials are intended for children ages 5-12. Children 13+ are encouraged to attend the full virtual conference with a parent or guardian.

Thank You! Your time, efforts, and stories are making a giant impact! Thank you for investing in the greater CHD community by participating in this advocacy event. Conquering CHD values your commitment, and we look forward to returning to in-person conferences in 2022.

If you are online during the conference, please be sure to tag us @Conquering CHD and use hashtags #ConqueringCHD, #CHDAdvocacy.

Stay tuned to our website and social media accounts for next steps after the conference. There is always more advocacy work to be done. You can even sign-up for our e-newsletter and be the first to get the scoop:

https://www.conqueringchd.org/involvement/take-action-now/