SpringFest 2020 Program
Details for our SpringFest weekend are continuing to be added, so please check for updated info.
DAY 1
Friday, April 3
3pm Hotel Check-In Begins
HOTEL LOBBY
4-8pm SpringFest Check-In
CENTER CONCOURSE, REGISTRATION AREA
4-8pm Select Vendor Tables Open
CENTER CONCOURSE and CROWN FOYER
6-7pm Dinner and Welcome!
Join us for dinner and an overview of our exciting SpringFest weekend!
SPEAKERS
Deanna Mitchell, MD, Pediatric Hematology-Oncology, Helen DeVos Children's Hospital, Grand Rapids; Susan Lerch, Executive Director, Hemophilia Foundation of Michigan, Regional Director, HTC Network, Region V-East; Gwyn Hulswit, MA, Associate Director, Hemophilia Foundation of Michigan
AMBASSADOR BALLROOM
7:30-9:30pm Industry Educational Rooms
Industry educational rooms are staffed by our industry partners and provide opportunities for community members to ask questions in a relaxed setting.
Takeda–Grandview Rooms C and B
BioMarin–Thornapple Room
Genentech–Grandview Room A
Novo Nordisk–Heritage Hill Room
Pfizer–Berkey Room
Aptevo Therapeutics–Haldane Room
CSL Behring–Winchester Room
Octapharma–Pullman Room
Sanofi Genzyme–Kendall Room
3RD FLR, CONFERENCE CENTER
Takeda invites you to an educational program about VonVendi.
DAY 2
Saturday, April 4
7:30-9am Breakfast
AMBASSADOR BALLROOM
8am-5pm Community Connections Area
Join us in the Community Connections Area! HFM staff and volunteers will be here to assist you and answer any questions you may have. Visit information tables to register for camp, UNITE walks and other activities. Learn about HFM’s adoption program, and learn how you can help girls and women around the world through the Days for Girls program. See you there!
WEST CONCOURSE
8am Check-In Continues
CENTER CONCOURSE, REGISTRATION AREA
9am-4pm Vendor Tables Open
CENTER CONCOURSE and CROWN FOYER
9-10:30am Keynote: Music Therapy for Stress Management
In this interactive session for all ages, participants will learn techniques for coping with stress and anxiety through music. Participants will be taught about how we process music and the physiological effects of music on the brain and body, as well as how to use rhythm and tempo to modulate their physical, emotional, and cognitive state.
SPEAKERS
Tim Ringgold, MT-BC, Author, Music Therapist
Sponsored by CSL Behring
AMBASSADOR BALLROOM
10:30-11am Childcare Drop-Off
Leave the kids with us so you can attend Saturday sessions! (Childcare coordinated by Corporate Kids.)
VANDENBERG ROOM
Ages 0-4
PANTLIND BALLROOM
Ages 5-12
ATRIUM ROOM
Teen Track–Ages 13-17
Teens will join the adults for lunch and afternoon snack, but have their own sessions in the Atrium room (lower floor) where hijinks will abound!
11a-12p Jenga and Ice Breakers
1:10-2:10p Dental Presentation, Karen Ridley, RDH, MS
2:10-3:10p Transition Challenges for Teens, Missy Frey, RN–BC, BSN, CPN
4-5p The Science of Optimism, Judy Saltzberg, PhD
11am-12pm Breakout Session 1
1. Roundtables
Four 20 minute sessions occurring simultaneously with opportunities to rotate between topics.
Aging in Place with Grace
SPEAKER
Samantha A. Carlson, LMSW, Older Adult Services, Area Agency on Aging, Region IIIA, Health & Community Services Department
Navigating the Complex Web of Educational Medical Plans: 504 Plans, IEP, Student Rights, and School Visits
SPEAKER
Laura McGinity, LMSW, University of Michigan Hemophilia and Coagulation Disorders
Sibling Support
SPEAKER
Dave Rushlow, LMSW, and Kathi Sheldon, RN-C, Northern Regional Bleeding Disorder Center, Munson Medical Center
Women and Girls' Health with a Bleeding Disorder: The Importance of the Comprehensive Girls Clinic
SPEAKER
Cynthia Brown, RN, NC, Hurley Medical Center, Eastern Michigan Hemophilia Treatment Center; Charity Stadler, RN, BSN, NC, Children's Hospital of Michigan Hemostasis and Thrombosis Center
GRANDVIEW ROOMS ABC, 3RD FLOOR CONFERENCE CENTER
2. A New Approach to Treating Hemophilia A: Harnessing the Power of the Cell: The Path to the Shielded Living Therapeutics Platform
Innovation of the next generation of therapies for hemophilia A has had its share of successes and challenges. We will explore this history--what has been done, what lessons have been learned, and how Sigilon’s Shielded Living Therapeutics™ platform has the potential to be the answer in harnessing the power of the cell.
SPEAKERS
Deya Corzo, MD, Chief Medical Officer, Sigilon
EMERALD B, 2ND FLOOR CONFERENCE CENTER
3. Understanding Gene Therapy Research and its Potential 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 that plays a role in 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
EMERALD A, 2ND FLOOR CONFERENCE CENTER
4. Give It A Shot: A New Type of Hemophilia A Therapy
Join us for a one-hour discussion about HEMLIBRA (emicizumab-kxwh) in people with hemophilia A with or without factor VIII inhibitors. This program will be presented by Dr. Tami Singleton, who will discuss the efficacy of HEMLIBRA in adults and adolescents with or without factor VIII inhibitors; how HEMLIBRA works; and the HEMLIBRA safety profile.
SPEAKERS
Tami Singleton, MD and Louis C
Presented by Genentech
BERKEY, 3RD FLOOR CONFERENCE CENTER
5. VonVendi
Takeda invites you to an educational program about VonVendi.
SPEAKERS
Suzi Greer, BSN, RN, Senior Clinical Specialist, Takeda
Jan Martin, MSN, RN-BC, CPN, Senior Clinical Specialist, Takeda
HALDANE, 3RD FLOOR CONFERENCE CENTER
6. You Count on Your Joints More Than You Think
Description TBA
SPEAKERS
Shelley Gerson, MEd, Patient Relationship and Advocacy Manager, Sanofi Genzyme
PEARL, 2ND FLOOR CONFERENCE CENTER
12:15-1pm Lunch
Please join us for lunch! We will be presenting HFM's scholarship recipients and sharing an interactive community quiz.
AMBASSADOR BALLROOM
1-2pm Getting to Know Your Michigan HTCs
The presentation will focus on several aspects of HTCs including the history of HTCs, how HTCs are supported, how the bleeding disorder community can help sustain the hemophilia treatment center model of care, and how the Hemophilia Alliance assists hemophilia treatment centers and the bleeding disorder community. The presentation will have a panel discussion with members from Michigan HTCs.
PANELISTS
Jeff Amond, MSSW, APSW, Director, Payer Relations, Hemophilia Alliance; Elizabeth Sandon-Kleiboer, RN, BA, Pediatric Coagulation Program Manager, Helen DeVos Children's Hospital; Susan Lerch, HFM Executive Director, Regional Director, Region V-East; Jim Mohnach, HFM Board President, Digital Marketing Lead, Ford Motor Company; Stephanie Raymond, Cascade Executive Director; Travis Tussing, HFM Regional Coordinator, Federal Grants Director
AMBASSADOR BALLROOM
2:10-3:40pm Breakout Session 2
1. Yes You Can: Navigating Medicare
Choosing and using your Medicare plan can be as challenging as taking a test on the first day of class. In this session, we will go over the basics of Medicare, the types of Medicare plans, and then delve into some “Golden Tips” to support you as you apply for and utilize your plan. Get information on where to go for help and possible financial assistance available to you as someone with a bleeding disorder.
SPEAKERS
Colleen Joiner, LMSW, Cascade Hemophilia Consortium; Bob Callery, Michigan Medicare/Medicaid Assistance Program (MMAP)
EMERALD A, 2ND FLOOR CONFERENCE CENTER
2. Gene Therapy Research: Understanding the Science
A one-hour presentation with Q&A focused on what causes a genetic disorder, how investigational gene therapies are being developed and researched, and what the clinical trials are aiming to understand. Many gene therapies are being studied in people living with a range of conditions, including hemophilia A and B, to determine if they are safe and effective. No gene therapies for hemophilia have been approved for use. Join us and others with hemophilia at this engaging session as we look into the science of gene therapy research and the biology behind it.
SPEAKERS
TBA
Presented by BioMarin
BERKEY, 3RD FLOOR CONFERENCE CENTER
4. Nurturing Couple Relationships
Teaches parents how to put your child’s bleeding disorder in its place and take your relationship with your partner or spouse off the back burner.
SPEAKERS
Sarah Watson, LPC, CST, ATR
HALDANE, 3RD FLOOR CONFERENCE CENTER
5. The Science of Optimism: Staying Optimistic While Navigating Change
Through interactive exercises, attendees will discover how learned optimism can help us navigate life’s transitions. This session was developed in partnership with the University of Pennsylvania (UPenn) Positive Psychology Center. There will be take-home resources to support further learning.
SPEAKERS
Judy Saltzberg,PhD
Sponsored by Genentech
PEARL, 2ND FLOOR CONFERENCE CENTER
3:40-4pm Break and Snack
Sponsored by Takeda
CENTER CONCOURSE
4-5pm Breakout Session 3
1. Alternative Pain Therapies
A Hemophilia Treatment Center nurse practitioner will discuss alternative methods for managing acute and chronic pain.
SPEAKERS
Rosanne Ososki, MSN, APRN-BC, Nurse Practitioner at Detroit Receiving Hospital and University Medical Center Comprehensive Center for Bleeding Disorders and Thrombosis
EMERALD A, 2ND FLOOR CONFERENCE CENTER
2. The Female Connection
Learn how women inherit hemophilia, what it means to be a carrier of the hemophilia gene, and the effects of hemophilia on women and girls.
SPEAKERS
TBA
Presented by Novo Nordisk
PEARL, 2ND FLOOR CONFERENCE CENTER
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.
Sponsored by the Hemophilia Federation of America.
SPEAKERS
Dave Rushlow, LMSW, Northern Regional Bleeding Disorder Center, Munson Medical Center
KENDALL, 3RD FLOOR CONFERENCE CENTER
5. VWD for the Family
How does VWD impact all members of your family? Can a family have members with different types of VWD? What if you can’t trace VWD in older relatives? How has treatment changed over the years? Please attend this session to discuss these and other topics with Dr. Shavit and other community members.
SPEAKERS
Jordan Shavit, MD
HALDANE, 3RD FLOOR CONFERENCE CENTER
6. Mindfulness
Mindfulness is a quality that we all possess. It can be an important tool to help us navigate through life. This presentation will explore mindfulness, how it can benefit the body and the mind, and promote a healthier lifestyle.
SPEAKERS
Suzi Greer, BSN, RN, Senior Clinical Specialist, Takeda
Jan Martin, MSN, RN-BC, CPN, Senior Clinical Specialist, Takeda
EMERALD B, 2ND FLOOR CONFERENCE CENTER
5-5:15pm Childcare Pick-Up
VANDENBERG ROOM
Ages 0-4
PANTLIND
Ages 5-12
ATRIUM ROOM
Ages 13-17
5:15-6pm 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.
GRANDVIEW ABC, 3RD FLOOR CONFERENCE CENTER
6:30-7:45pm Dinner & Presentation
HELLOChat: Joint Health
Sponsored by Takeda
AMBASSADOR BALLROOM
7:45-9:30pm An Evening of Family Fun and Learning!
Our VIP Family Night has something for the whole family. Join us for interactive games and educational activities to help support and celebrate the Bleeding Disorders community!
Sponsored by Takeda
CENTER CONCOURSE
DAY 3
Sunday, April 5
8-10am Breakfast, Raffles, and Wrap-Up
*Must be present to win!
AMBASSADOR BALLROOM
