SpringFest 2019 Program
The SpringFest schedule is subject to change, thank you for your understanding.
DAY 1
Friday, April 26
3pm Hotel Check-In Begins
HOTEL LOBBY
4-8pm SpringFest Registration
FOYER OUTSIDE AUDITORIUM 1
4-8pm Select Vendor Tables Open
CONFERENCE CENTER 1st FLOOR
6-7:30pm Dinner and Welcome!
Join us for dinner and an overview of our exciting SpringFest weekend!
WILBANKS BALLROOM
7:30-9pm Movie Night, Bombardier Blood
Chris Bombardier made history as the first person with severe hemophilia to summit Mount Everest. Come be inspired by his amazing adventure show-cased by Believe Limited. Film sponsored by Octapharma. In support of Save One Life.
SPEAKERS
Amy Board, Rob Bradford, Believe Limited; Laurie Kelly, Save One Life
WILBANKS BALLROOM
9-11pm Industry Educational Suites
Conference Room A – Takeda
Conference Room B – Novo Nordisk
Conference Room F – CSL Behring
Conference Room E – Sanofi Genzyme
Boardroom – Genentech
Seminar Room 1 – Octapharma
2ND FLR, CONFERENCE CENTER
DAY 2
Saturday, April 27
6:30-7:30am Tai Chi for Health and Happiness
Tai Chi, the ancient Chinese art, is considered to be one of the best mind-body forms of fitness. It can be learned by anyone, regardless of physical condition or age. Learn with Rick Starks how to move effortlessly, without feeling as if it’s a workout, while achieving all the benefits of a trip to the gym!
SPEAKERS
Rick Starks
CONFERENCE ROOM F
7:30-9am Breakfast
WILBANKS BALLROOM
8am-5pm Community Connections Room
Join us in the Community Connections Room! HFM Staff and volunteers will be here to assist you and answer any questions you may have. Visit the booths throughout the room to register for events, discuss adoption opportunities, take photos in the "Advocacy Action Photo Booth," and learn hands on how you can help girls and women around the world through the Days for Girls program. We will also have some CBE swag for sale in honor of HFM's 50th anniversary of Camp Bold Eagle. See you there!
8am Registration Continues
COMMUNITY CONNECTIONS ROOM IN AUDITORIUM 2
9am-4pm Vendor Tables Open
AUDITORIUM 2
9-10am Leading Edge: Gaming the System
In this fun, engaging, and informative workshop Pat Torrey will explore the impacts of working from within a system and thinking outside of the box to meet your goals and desires. Pat will pull from recent research and years of experience of working with people to show how resilience, creativity, and understanding personality types helps us to change our community and our health outcomes from the inside out. This program has been designed for all ages. This program is made possible through generous funding by Pfizer.
SPEAKERS
Pat Torrey, Gutmonkey, Founder, CEO, & Big Dog
WILBANKS BALLROOM
9-10am Teen Morning Hangout! The Me You See
Teen participants will discuss stereotypes and faulty assumptions about bleeding disorders vs. the reality they live. They will talk about the messages they want to share and strategies to reveal their true self to their non-bleeder peers (and teachers and family!).
SPEAKERS
Shellye Horowitz, MA. School Administrator/Counselor
CONFERENCE ROOM E
10-10:30am Childcare Drop-Off
Leave the kids with us so you can attend Saturday sessions!
Childcare coordinated by A Helping Hand.
Teens will participate in the Leading Edge program run by GutMonkey.
OUTSIDE AUDITORIUM 1
Ages 13-17
OUTSIDE AUDITORIUM 1
Ages 5-12
ELIZABETH ANN BALLROOM
Ages 0-4
10:45-11:45am Breakout Session 1
1. I am confident, I am powerful: The Psychosocial Benefits of Positive Self Talk
Negative self talk can greatly impact our self esteem and world view. Your self talk can either sabotage or support you when dealing with everyday life and a chronic illness. Please join Annie Phillips for this lecture/discussion that will provide you with the necessary tools to develop a positive self-concept. Special thanks to Laura Maynard McGinity for her contributions to this presentation.
SPEAKERS
Annie Phillips, LMSW, Children's Hospital Detroit, Ellen Kachalsky, LMSW, ACSW, Henry Ford Hemophilia Treatment Center
CONFERENCE ROOM D
2. Tai Chi for Health and Happiness
Tai Chi, the ancient Chinese art, is considered to be one of the best mind-body forms of fitness. It can be learned by anyone, regardless of physical condition or age. Learn with Rick Starks how to move effortlessly, without feeling as if it’s a workout, while achieving all the benefits of a trip to the gym!
SPEAKERS
Rick Starks
CONFERENCE ROOM F
3. Slow Flow Yoga
Interested in yoga, but unsure how to get started? Join a certified yoga teacher and physical therapist for an introductory yoga class designed specifically for individuals affected by bleeding disorders. We will safely explore physical postures with an emphasis on personal modification and body awareness and while delving into the spiritual and emotional benefits of the practice. Please wear comfortable clothing.
SPEAKERS
Sarah Procario, CYT 200, Sherry Herman-Hilker, PT, MS
CONFERENCE ROOM H
4. Resiliencia: Creciendo a través de los desafíos de la vida
Manejar el estrés es un aspecto importante de nuestras vidas diarias. Esta presentación hablará sobre las causas más comunes del estres y proporcionará algunos ejemplos sobre cómo adaptarse mejor y manejar la adversidad. A través de actividades interactivas divertidas, explorarás lo que significa ser resiliente, y aprenderás algunas aptitudes asociadas así como también ideas y herramientas para vivir un estilo de vida saludable.
SPEAKERS
Clemencia Casas-Byots, Healthcare Educator II, Takeda
SEMINAR ROOM 5
5. Men's Wellness
Join Dr. Rana for information about men and healthy living with a bleeding disorder. It’s important to view our health in a broader context than “just” our bleeding disorder.
SPEAKERS
Jatin Rana, MD, Director of the Breslin Center, Adult Hematologist at MSU Center for Bleeding and Clotting Disorders
CONFERENCE ROOM B
6. From Menarche to Menopause: Navigating Expected and Unexpected Changes in Hemostasis
Bleeding manifestations in women with bleeding disorders will be reviewed with particular emphasis on gynecologic bleeding symptoms from menarche through menopause. We will discuss the roles of various treatment modalities for menorrhagia and, if time permits, the risks and benefits of treatment of cardiovascular disease in the postmenopausal woman with an underlying bleeding disorder.
SPEAKERS
Paula Bockenstedt, MD, University of Michigan Hemophilia Treatment Center
CONFERENCE ROOM C
7. No Sweat: Staying Active and Healthy with a Bleeding Disorder
It’s possible for people with a bleeding disorder to enjoy the benefits of physical activity. This program discusses the benefits of sports and exercise, how to choose and prepare for an activity that’s right for you, and how to incorporate physical activities into daily life.
SPEAKERS
Sue Kovats-Bell, BSN, RN, Takeda
CONFERENCE ROOM A
12-1pm Lunch
Brief Presentation from Nayan Spangler, RN, BSN, CHC, Hemophilia Community Clinical Educator, Genentech
WILBANKS BALLROOM
1-2pm The Shifting Paradigms of Treatment for Hemophilia
This session will discuss the landscape of treatment for hemophilia - past, present and future, with a focus on novel therapeutics that are changing the paradigm of what treatment looks like for hemophilia. You will learn about new subcutaneous, long-lasting therapies that substitute for traditional factor replacement, emerging therapies that aim to rebalance the clotting system, as well as the latest on gene therapy - promise and remaining challenges.
SPEAKERS
Steve Pipe, MD, University of Michigan Hemophilia Treatment Center
WILBANKS BALLROOM
2-2:30pm Break
2:30-3:30pm Breakout Session 2
1. Managing Chronic Pain
Jennifer Haywood, social worker and addiction specialist, will be sharing tools about how to talk with your health provider about your pain or the pain of your family member. She will also discuss the challenges of chronic pain and ways to manage your pain, ways to avoid addiction, and how to decrease your pain level as much as possible. Finally, learn the difference between addiction vs. physiological dependence.
*this session will break at 3:30pm and then the conversation will continue from 4:00pm-5:00pm
SPEAKERS
Jennifer H. Haywood, LISW-S, LICDC-CS in coordination with Ellen Kachalsky, LMSW, ACSW, Henry Ford Hemophilia Treatment Center
CONFERENCE ROOM E
2. Parenting: When the Parent is the Patient
Parenting is challenging. And it becomes even more complicated with a chronic bleeding disorder in the mix. For parents with bleeding disorders, there are unique challenges that can directly impact family life. You may have a lot of questions, such as: “How do I talk to my kids about my condition? Is my partner feeling overwhelmed? What if a bleed interferes with our daily routine?” We developed this program so that parents – and expecting parents – could have an open forum to talk about the issues they face, in a supportive and encouraging environment.
SPEAKERS
Shelley Gerson, M.Ed., Patient Relationship and Advocacy Manager for Sanofi Genzyme
CONFERENCE ROOM A
3. Understanding Gene Therapy Research and its Application to Hemophilia
This presentation is intended to walk you through the journey that started over 50 years ago with the beginnings of gene therapy research. We will walk through the basics of genetics and how it plays a role in genetic diseases such as hemophilia. With that knowledge, we will look at how gene therapy is meant to work, and discuss both the potential for and the challenges of investigational gene therapy research today.
SPEAKERS
Laureen Temple, Spark Therapeutics
CONFERENCE ROOM B
4. Hemophilia Alliance 101
This session will provide patients and their families with general information about the Hemophilia Alliance and the unique relationship they have with Hemophilia Treatment Centers.
SPEAKERS
Jeff Amond, MSSW, APSW, Payer Relations, Hemophilia Alliance
CONFERENCE ROOM C
5. The Science of Optimism: Staying Optimistic While Navigating Change
Join us as we discover how learned optimism can help us navigate life’s transitions. The session includes interactive exercises to apply learning. The program was developed in partnership with the University of Pennsylvania Positive Psychology Center.
SPEAKERS
Shannon Paoletti, Ph.D, Genentech
CONFERENCE ROOM D
*Session runs until 4pm
3:30-4pm Break and Snack
Sponsored by Takeda
4-5pm Breakout Session 3
1. Advanced Directives: Making Your Medical Wishes Known
If you were unable to speak in a medical emergency - who would know what your medical wishes are? In many states, including Michigan, written appointment is free, and can be critical in an emergency situation. Paperwork can be completed free in the state of Michigan, and should be reviewed annually with family. We will walk you through how to complete the paperwork, how to discuss difficult decisions with family members, and how to ensure your healthcare team is aware of your wishes.
Sponsored by the Hemophilia Federation of America.
SPEAKERS
Samantha A. Carlson, LMSW, Director of Area Agency on Aging 3A; Kalamazoo County Health & Community Services
CONFERENCE ROOM F
2. Emergency Preparedness: What you need to know to make it through
This session will discuss what constitutes an emergency, how to be prepared for an emergency room visit, and the importance of emergency planning for persons with bleeding disorders. We hope you come prepared to share some of your own tips and learn some new tips. Handouts will be provided for your family’s future emergency plans.
SPEAKERS
Sue Adkins, BSN, RN, Regional Core Center Specialist, HFM
CONFERENCE ROOM B
3. State of the State
How did the midterm elections impact the state of Michigan and what's happening in Lansing? Join us as we discuss the current landscape in the Michigan legislature and opportunities and challenges in health policy. You'll leave with a better understanding of policy-making in Lansing and clear steps to get involved.
SPEAKERS
Sarah Procario, Advocacy and Communications Manager, HFM
CONFERENCE ROOM C
4. Mental Health and Well-Being: Let's focus on men's health (Men Only Session)
This session will focus on men and mental health. How do you deal with Depression? Anxiety? Anger? Isolation? Please come ready to talk confidentially in a small group setting about any mental health issues you may be experiencing. You will have the opportunity to both receive support from others and to give support as well. Develop self-awareness by listening to others with similar issues.
Sponsored by the Hemophilia Federation of America
SPEAKERS
Dave Rushlow, LMSW, Northern Regional Bleeding Disorder Center, Munson Medical Center
CONFERENCE ROOM H
5. Von Willebrand Disease: Do you know the facts and future?
Brief overview of VWD and discussions of treatment strategies for bleeding issues. What does the future hold for this disease? What research is ongoing in VWD and what resources are available?
SPEAKERS
MaryJane (Missy) Frey, RN, BSN, CPN, Midwest Hemophilia Nurse Advisor, CVS Specialty
CONFERENCE ROOM A
6. Managing Chronic Pain Part 2: Conversation Continued
Jennifer Haywood, social worker and addiction specialist, will be sharing tools about how to talk with your health provider about your pain or the pain of your family member. She will also discuss the challenges of chronic pain and ways to manage your pain, ways to avoid addiction, and how to decrease your pain level as much as possible. Finally, learn the difference between addiction vs. physiological dependence.
SPEAKERS
Jennifer H. Haywood, LISW-S, LICDC-CS in coordination with Ellen Kachalsky, LMSW, ACSW, Henry Ford Hemophilia Treatment Center
CONFERENCE ROOM E
5-5:15pm Childcare Pick-Up
OUTSIDE AUDITORIUM 1
Ages 13-17
OUTSIDE AUDITORIUM 1
Ages 5-12
ELIZABETH ANN BALLROOM
Ages 0-4
5:30-6:15pm HFM Membership Reception/Membership Meeting
We welcome all members with lifetime or annual memberships to this reception to thank you for your support, and have a brief meeting with our HFM Board Chair, Jim Mohnach. Light refreshments will be provided.
THE TERRACE DINING ROOMS 1 & 2
6:30-7:15pm Dinner & Award Presentation
SPEAKERS
Susan Fenters Lerch, Tim Wicks, Lynn Allen
WILBANKS BALLROOM
7:15-8pm Takeda Educational Presentation, The Journey of Factor: A Deeper Dive
This program builds upon the HELLO TALK of “My Factor My Body.” This presentation provides a deeper dive on how the various factors, including VWF, work in the blood clotting process and how hemophilia factor treatment replaces missing factor VIII (FVIII) or factor IX (FIX) within this process. Also, the topic of how hemophilia factor replacement offers options for individualized treatment will be discussed.
SPEAKERS
Sue Kovats-Bell, BSN, RN
WILBANKS BALLROOM
8-10pm Family Evening Activity
Factor Your Way Challenge: Unlock Your Knowledge of Factor
Follow the clues and Factor Your Way through several puzzles to discover how factor therapy works and how it can support patients through all moments of their lives. Work together to reveal the Secret Phrase to solve the case and receive a special prize.
Sponsored by Takeda
CONFERENCE CENTER LOBBY
8:30-9:15pm StoryFest
Join us for a relaxing evening activity including crafts, evening stretches, and story time. There will also be cookies and milk! Let’s make this a new SpringFest tradition.
*wear comfortable clothes – jammies welcome!*
ELIZABETH ANN BALLROOM
DAY 3
Sunday, April 28
6:30-7:30am Tai Chi for Health and Happiness
Tai Chi, the ancient Chinese art, is considered to be one of the best mind-body forms of fitness. It can be learned by anyone, regardless of physical condition or age. Learn with Rick Starks how to move effortlessly, without feeling as if it’s a workout, while achieving all the benefits of a trip to the gym!
SPEAKERS
Rick Starks
CONFERENCE ROOM H
7:30-9am Breakfast, Raffles, and Wrap-Up
WILBANKS BALLROOM
