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!

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.

SPEAKERS

Amy Board, Rob Bradford, Believe Limited

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 Registration Continues

AUDITORIUM 2

9am-4pm Vendor Tables Open

AUDITORIUM 2

9-10am Reconnections & Laughter!

Pat's passion for contributing to individuals' realization of their boundless potential has led him to delivering animated and engaging presentations all over the world. He loves free diving, dance-floor jiving, and playing well with others. Come and reclaim more of your boundless potential!

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!

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

Session description to come!

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

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