2019 FEW Program Descriptions

Friday, July 12, 2019

07:00 – 08:30 PM Meet your Board Reception, Great Room Donor Recognition & Exhibits

Thank you to GHA’s 2018 Major Donors, Sponsored by Octapharma$5,000 Carney's Kids Foundation$2,500 + Andrew Stringer$1,000 + Charpentier Law, LLC, Dirk & Trudy Stringer, Mike Degenhart/MIDSCI, Kory Kleppe,

Karen Funderburk, Bob & Gina Eschbacher, LHM, Matt Lovaldi/Midland Optical, Swink, Fiehler, & Company, Tom Guignon.

$800 - $999 Chris & Abby Schneider, Tony & Danielle Flores, J.B. Marine Service, INC., Robert Biggs, Realtors

Over $500 Todd Daube, Cyril & Charla Johannes, Stephen Johannes, Janet & Bryan Sims, Judy & Ray Bagato, Jake & Stephanie Bauman, Mareena & James Snarey, Kendra Scott, Farotto’s Pizza & Pasta, Barb & Jim Love, Ascension, Great Southern Bank, Joshua S. Arnold State Farm Insurance Agency, KOHLs, Michael Gaffney, Oxford Lab Products, Michael & Kristina Klein.

Saturday, July 13, 2019

09:30 – 09:45 AM Welcome & Opening Remarks Great Room Speakers: Anne Parrott, GHA Board President & Bridget Tyrey, GHA Executive Director Session: Welcome, update and introduction of GHA’s Board of Directors.

09:45 – 11:00 AM What’s Your Gut Monkey? Great Room Speaker: Pat TorreySession: GutMonkey fields plenty of questions about their name. A GutMonkey is defined in the Urban Dictionary as, "A deep-seated desire, or passion, that at gut-level inspires you to act." This engaging and interactive breakfast presentation will focus on finding your GutMonkey. What inspires you? Personal passion is a positive motivator and a great way to get engaged with what challenges you to get out there and "Be Brave." Sponsored by Pfizer.

11:00 AM – 12:00 PM “It’s Okay to Not Be Okay” Mental Health Great RoomSpeaker: Debbie De La Riva, LPC, Founder, Mental Health Matters TooSession: This session will cover the interconnectivity of mental health and physical health, the stigma associated with mental illness and resources for mental health care.

12:00 – 01:00 PM Lunch in the Exhibit Hall Great Room

AFTERNOON BREAKOUTS #101:00 – 4:00 PM Teen Drop-Off & Teen Program Board Room 4

Leading Edge 2019: Making Change When Change is Hard********This Session is for registered teens 11-17 only Session: Change is everywhere, constant, and inevitable. We dread it, and put our deepest hope in it, in the very same moment. Writers, artists and philosophers alike have been obsessed with change since the

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2019 FEW Program Descriptions

beginning of time. There are thousands of books, movies, and quotes whose central theme focuses on change. Rumi shares his wisdom by saying, “Yesterday I was clever, so I wanted to change the world. Today I am wise, so I am changing myself.” And we have all heard Ghandi’s famous quote, “Be the change that you wish to see in the world.” These, are tall orders. These, are lofty goals. And these, are the reasons we love to work with teens! Because we believe that teens are constantly trying to change the world, and themselves, for good. In this year’s Leading Edge Program we will take an intimate look at how to make change, intra-personally and inter-personally, when change is hard to make. We will play, move, and explore, to uncover the relationship between our logical and emotional selves, and the role each plays in our journey to make change. We will investigate the ever changing elements of our environments and communities, to uncover potential barriers, and hidden boosts that we may encounter along the way. This experiential program designed specifically for teens will be fun and engaging, challenging and inspiring. All you need to do is bring a curious mind and a willingness to play, and we’ll uncover the magic of change making together. Sponsored by Pfizer.

01:00 – 1:50 PM vWD Panel – Ask the Experts Conference Room FFacilitator: Jhon Velasco. Panelists: Penny Kumpf, RN; Dr. Elaine M. Majerus, MD, PhD, HTC Medical Director, Washington University in St. Louis; Andrea Lewis, vWD patientSession: As a person with or a caretaker of someone with vWD, you may have many questions, including, “What are the genetics of vWD? How do I manage my vWD? Can I get joint bleeds with vWD?” This workshop will go over the basics of vWD and give participants a chance to ask questions so they can walk away feeling informed about their health! Sponsored by NHF.

01:00 – 01:50 PM Self-Infusion – Life Lessons Conference Room H Nurses: Sue Pardeshi, RN, BSN, Jessica Walker, RN BSN. Speakers: Austin Hane, Liam and Suzanne Sirko-Carney. Session: A young adult and a school aged child will demonstrate self-infusion. They will share their experiences and how being able to self-infuse has affected their lives. Also hear from their families as they discuss their perspective. Nurses will be present to answer questions and discuss tips on successful infusion.

01:00 – 01:50 PM New Product Update Conference Room ISpeaker: Morey Blinder, MD, HTC Adult Hematologist, Washington University in St. LouisSession: This interactive session will provide participants current information on all products used by bleeding disorder patients.

01:00 – 01:50 PM Less Stress, More Living Conference Room JSpeaker: Debbie De La Riva, LPC, Founder, Mental Health Matters TooSession: This session will cover the impact of stress on one’s physical and mental health and will provide information on evidence-based techniques to manage internal anxiety.

AFTERNOON BREAKOUTS #2

02:00 – 03:00 PM “Let’s Talk Period” Mothers & Daughters Conference Room HSpeaker: Penny Kumpf, RN at Hemophilia of GeorgiaSession: While periods and puberty are a healthy and normal part of a girl’s life, it can feel like a true hardship for a girl with a bleeding disorder. Many may feel alone in what they are dealing with and not know where to turn for answers to questions they may have. In this interactive workshop, girls and mothers will have the opportunity to discuss scenarios and solutions relating to puberty and periods in a

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2019 FEW Program Descriptions

safe environment. They will leave with tips on how to transition into this new chapter of their lives, feeling connected and empowered. By the end, participants will be able to discuss concerns, share tips and support, and discuss solutions for difficult scenarios

02:00 – 03:00 PM Be Mindful: Managing Your Pain Conference Room ISpeaker: Jessica Lovercamp, Clinical Specialist RN, BSN Session: Identify pain management strategies that you can discuss with your health care provider and learn about appropriate pain management treatments such as: pharmacological, physical, psychological. Sponsored by Bayer.

02:00 – 03:00 PM Stretching Techniques Conference Room GSpeaker: Lisa Roberts, E-RYT200, RCYT; Makenzie Sledd, PT Washington University Session: This session will focus on stretching and include breathing and centering techniques to help reduce stress.

03:00 – 03:15 PM Break Sponsored by Bayer

AFTERNOON ROUNDTABLES

03:15 – 04:15 PM Family Roundtable Conference Room H Facilitator: John Carney03:15 – 04:15 PM Young Adults Conference Room F Facilitator: Rieley Schneider 03:15 – 04:15 PM Grandparents Roundtable Conference Room I Facilitator: Trudy Stringer

EVENING EVENTS

06:00 – 07:30 PM Awards Dinner Ballroom ABC Session: Matthew Wilson Scholarship recipients will be announced, as well as outstanding members in our community and GHA’s Volunteer of the Year.

08:00 – 10:00 PM Dive in Movie & Dessert at the Pool Outdoor Pool Join us at the outdoor pool for a lemonade and cookie reception before the dive in movie. There will be an open bar from 8:00 – 10:00 p.m.

08:00 - 10:00 PM Teen Lounge Chesterfield Athletic Club Session: Teens aged 12 – 17 will have access to the Teen Lounge in the Chesterfield Athletic Club. There is a ping pong table, snacks, and a space for the teens to meet. Sponsored by ARJ Infusion Services

Sunday July 14, 201908:00 – 08:30 AM Remembrance Ceremony Board Room 1Session: Join us as we remember and celebrate those in our community who are no longer with us.

08:30 – 09:30 AM Breakfast Great RoomSponsored by Takeda

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2019 FEW Program Descriptions

09:30 – 10:30 AM Mindfulness Great Room Speaker: April Littrell, RNSession: Mindfulness is a quality that we all possess. It can be an important tool to help us navigate through life. This presentation explores mindfulness, how it can benefit the body and the mind, and promote a healthier lifestyle. Sponsored by Takeda

10:30 – 11:00 AM Raffle and Closing Session Great Room

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