Program of Events


Friday, April 21, 2017


3pm Hotel Check-in Begins, Hotel Lobby

3pm-8pm Select Vendor Tables Open 

4-7:30pm SpringFest Registration, Conference Center 1st floor, follow signage & balloons!

Registration for adults and children

Three evening activities

Exclusivesponsor:
Bioverativ

Science Fair & Dinner, Wilbanks Ballroom
Ideal for families with children

Join us in honoring the bleeding disorders community in recognition of World Hemophilia Day. Participate in a night of learning, imagination and inspiration in the World Hemophilia Day Science Lab, a family-friendly, activity where you’ll take part in hands-on science activities and trivia. 

 

Mapping Your Future & Dinner, Wilbanks Ballroom
Ideal for families with teens

Determining our “life’s mission” isn’t always a clear path forward. We’ll discuss ways to identify and map out the journey ahead, including tips for defining your ideal situation, setting clear milestones, and establishing a realistic action plan. 

Speaker: Becky Ybarra, Community Relations Manager, Bioverativ

 

The Power of Empowerment & Dinner, Auditorium 2
Ideal for all

It can be challenging to feel “empowered” when experiencing

new or challenging situations, yet it’s something we can learn, practice, and embrace. Learn ways of becoming more empowered, including acknowledging strengths, embracing individuality, creating safe environments, enhancing confidence, and establishing supportive partnerships.

Speaker: Carol DeMatteis, Community Relations Manager, Bioverativ


9-11pm Educational Suites Open 
Learn about consumer products in a casual atmosphere.

 

Saturday, April 22, 2017

 

8-10:30am SpringFest Registration Continues

Conference Center, follow signs & balloons!

8-9am  Breakfast - Welcome!
 

Wilbanks Ballroom

➤ Welcome! Susan Lerch, HFM Executive Director, HTC Network Regional Director

➤ Simone Azevedo, VP, Patient & Stakeholder Advocacy, Bioverativ

➤ Gwyn Hulswit, Director of Philanthropy, Sponsor acknowledgement & thanks

➤ Susan Lerch, Academic Scholarship Awards

8am-5pm Vendor tables open

Conference Center, 1st & 2nd floors

9am-5pm HFM Resource room PLEASE STOP BY!

Seminar Room 1 (We have popcorn!)

Pick up your pre-ordered CBE sweatshirt (or purchase one!), sign up for summer camp and east and westside walks; learn more about HFM activities, and learn how you can participate in HFM’s advocacy activities.

9:15am Childcare (0-4) check-in, Elizabeth Ann Ballroom

HFM community member and volunteer, Jenna Wicks, will lead a wonderful staff to care for our youngest children in a spacious room on the second floor of the conference center between 9:15am-5pm. Jenna received her Bachelors in early childhood development and currently works as the Art Studio Director at the University of Michigan North Campus Children’s Center where she works with children ages 0-4. Children will enjoy a variety of activities appropriate for their ages and development and all meals and snacks will be provided. 

 

9:15-9:45am Kids (5-12yrs) check-in for waterpark/Animal Magic, Auditorium 2

Splish, splash, ooh, aah! Kids ages 5-12 will have a fun-filled day at a water park and a colorful animal show. We’ll go to Splash universe Indoor Water Park in Dundee, MI, and then return to Eagle Crest Conference Center for an exotic performance by Animal Magic.

For more information, visit: www.splashuniverse.com and www.iwantanimalmagic.com

9:15-       Childcare check-in auditorium 2

9:45am   Transport to Splash Universe by bus Lunch at Splash Universe

3:45pm  Return to Eagle Crest Conference Center by bus

4pm        Animal Magic Performance

5pm        Pick-up kids in auditorium 1

10:30am Teens (13-17) check-in for laser tag/Animal Magic, Conference Room E


10:30-11:45am Sessions #1

  • Esperar lo Inesperado: Prepararse Para Las Emergencies

    Sala de Conferencia A

    Los trastornos sanguíneos pueden afectar la manera en

    la que reacciona ante una situacion de emergencia, como accidentes, traumas o catastrofes naturales. Este programa lo ayudará a usted y a su familia a desarrollar un plan de emergencias que sea adecuado para usted.

    Speaker: Clemencia Casas-Byots, B.A., Bilingual Health Educator, Shire

     

    Join us for HFM’s First-Ever Fundraising Session! Put the Fun in Fundraising

    Conference Room B

    You will receive tips and tricks that can be used again

    and again to give back and support your favorite missions, like ours. Whether you’re looking to learn a new skill or to enhance your current efforts in the world of fundraising,

    this session is for you.

    Attendees will be entered to win some fabulous gifts.

    Speakers: Tracy Earll, NHF Walk Director; Carrie McCulloch, HFM Special Events Manager; Janelle Gunn, HFM Special Events Manager – West Michigan

     

    Caring for the Carrier: The Medical and Psychosocial

    Effects of Being a Carrier

    Conference Room C

    Many women who are carriers experience symptoms of mild hemophilia that are often overlooked by health care providers. Women also have to deal with the psycho-social aspects of being a carrier. The goal of this talk is to provide support and information that is often needed to help deal with the impact of being a woman with a bleeding disorder.

    Speakers: Meera Chitlur, M.D., Director Hemophilia Treatment Center and Hemostasis Program, Children’s Hospital of Michigan, Detroit; Annie Phillips, L.M.S.W, Pediatric Social Worker, Children’s Hospital of Michigan, Detroit
     

    The Important Role of Dad

    Conference Room D

    Our culture doesn’t always support men who want to be a different type of “dad” than the stereotyped version. There are as many different ways to be a father as there are dads in the world. We have gathered a group of Dads who will share their experiences, challenges and joys.

    Speakers: Lynn Allen; Dave Luckey; John Semenchuk; Lynn

    Vanderwal, LMSW, Social Worker, DeVos Children’s Hospital

     

    What You Didn’t know About Children’s Special

    Health Care Services

    Conference Room F

    Learn how Children’s Special Health Care Services can help both children and adults with bleeding disorders. We will also clarify misconceptions  about the program, learn about the programs and services offered, and discuss concepts such as Medical Home and Care Coordination.

    Speaker: Lisa Huckleberry, Parent Consultant, Family Center

    for Children and Youth with Special Health Care Needs
     

    Roundtable Discussions 1

    Opportunity to have small group discussions, two topics

    per breakout session.

    Auditorium 2

     

    Co-pays, Insurance and Patient Assistance Programs The world of insurance, co-pays, and patient assistance programs can be very overwhelming. Get your questions answered and find out where you can go for help.

    Speaker: Ellen Kachalsky, LMSW

     

    Emergency Room Visits – Larger Institutions

    For those who live near larger hospitals.

    Are you prepared for an emergency with a bleeding disorders

    patient? It might be us, our child or partner. Learn how to be prepared for a trip to the ER, what to bring with you and how to advocate for yourself and family members.

    Speaker: Linda Percy, RN, MSN, CPN                                     7

     

    Emergency Room Visits – Smaller Institutions

    For those who live near hospitals in rural communities and small towns.

    Are you prepared for an emergency with a bleeding disorders

    patient? It might be us, our child or partner. Learn how to

    be prepared for a trip to the ER, what to bring with you and

    how to advocate for yourself and family members.

    Speaker: Matt Shullick, MPH, MHSA, MS, FNP-C

     

    A Daily Dose of Distraction

    Learn ways to enhance patient coping with pain/discomfort/ procedures using distraction techniques such as playing games, engaging in relaxation and maintaining comfort measures. Whether you are a parent, friend, caregiver or

    patient, come learn how distraction may benefit you.

    Speakers: Stephanie Katke, CCLS; Jessica Jarvis, CCLS, CFLE-P

     

    Ask The nurse

    Receiving a new diagnosis for yourself or your child can be overwhelming. In this session, an HTC nurse will help you understand your/your child’s bleeding disorder and the next steps in providing care.

    Speaker: Beth Sandon-Kleiboer, RN, BA

     

    Life with a School Aged Child with Hemophilia Raising a child can be challenging and raising a child with a bleeding disorder can create additional challenges. This session provides peer support from parents who have experience raising a child with hemophilia and additional support from a young adult who is living with hemophilia.

    Speakers Jay Luckey; Becky and Bryan Eckstein

     

    Grandparents

    Grandparents can play an important role in the lives of grandchildren with a bleeding disorder. We’ll highlight the real, lived experience of grandparents, and the challenges and joys of caregiving.

    Speakers: Kathy and Dennis Monach; Marcia Bird, LMSW

     

    Dental: Did you know?

    Finding a dentist when you have a bleeding disorder can be challenging. This roundtable discussion will give

    you practical tips to navigate this complicated system.

    Speaker: Karen Ridley, MSDH

     

    VWD and Your Child

    Raising a child can be challenging and raising a child with VWD can create additional challenges. This session provides information from a nurse’s perspective and

    opportunities to ask questions about your own challenges.

    Speaker: Amanda Kinker, RN

     

    Focus groups for Community Input

    Limited to 10 people per session

    Boardroom (Please sign up in the HFM Resource Room, prior to start of session.)

    Receive a $5* gift card by answering questions and sharing

    your opinions about your involvement in HFM. All responses are anonymous – the facilitator will not share any names of participants. *Stay for the full 75 minutes, & you’ll receive a

    $5 gift card to Target. Must be 18 and over, and may only

    attend one focus group.

    Facilitator: Michael Craciunoiu, Senior Director of Chapter

    Development, NHF

     

    Reflection & Remembrance

    Conference Room H

    Please stop by for reflection and remembrance anytime throughout the day.

     

12-12:45pm Lunch

Wilbanks Ballroom

Speaker: Rachelle Jacques, VP, US Hematology Marketing, Shire

Speaker: Congresswoman Debbie Dingell

 

12:45-1:30pm  keynote Speaker: Mike Callaghan, M.D.

Waves of Change: New Horizons for Care in Bleeding Disorders

Wilbanks Ballroom

■  Speaker: Mike Callaghan, M.D., Children’s Hospital of

Michigan, Detroit

 

1pm Teens return to Conference Room E

1:15pm Teens leave for Zap Zone (return  @ 3pm)


1:45-3pm  Sessions #2

 

Inhibidores y Enfermedad de Von Willenbrand

Sala de Conferencia A

Presentación sobre Hemofilia, los inhibidores, el estudio de SIPPET y la Seguridad de Plasma. Además un

a descripción de los tipos de la enfermedad de Von

Willebrand y su manejo.

Speaker: Wilton Rodriguez, Medical Science Liaison, Grifols

 

Fact or Fiction: Women’s Perspectives of

Bleeding Disorders

Conference Room B

When it comes to hemophilia, women are traditionally

seen as symptomatic carriers or caregivers, not as patients. But there’s more to the story. This educational session

will explore ways women can help change the narrative.

Speaker: Jane Cavanaugh Smith, Community Relations

Manager, Bioverativ


Bleeding Disorder Advocates: Influencing Health

Care Policy, Presented by State Representatives

Conference Room C

In the current political climate, many individuals are eager to participate in the political process. Hear legislators speak on effective advocacy practices along with a space

to ask questions.

Speakers:  State Representative Adam Zemke; State Representative Yousef Rabhi

Moderator: Sarah Procario, HFM Advocacy, Communications Manager

 

Medical Marijuana and Bleeding Disorders

Conference Room D

Attendees will learn about the impact medical marijuana has on individuals with bleeding disorders including pain management, the psychosocial benefits and drawbacks,

as well as laws surrounding medical marijuana.

Speaker: Samantha Carlson, LMSW, OSW-C, ACHP-SW

 

unraveling the Mystery of VWD

Conference Room F

Von Willebrand Disease is, in many ways, more complex than hemophilia. It also has been “under the microscope” for less years. Explore the challenges of diagnosis and

treatment, with emerging knowledge discussed.

Speaker: Jordan Shavit, M.D., Hemophilia Treatment Center, University of Michigan

 

Roundtable Discussions 2

Opportunity to have small group discussions, two topics

per breakout session.

Auditorium 2

 

Life with a School Aged Child with Hemophilia Raising a child can be challenging and raising a child with a bleeding disorder can create additional challenges. This session provides peer support from parents who have experience raising a child with hemophilia and additional support from a young adult who is living with hemophilia.

Speakers: Jay Luckey; Becky and Bryan Eckstein

glanzmann/Platelet Disorders

The basics of these diagnoses will be outlined, along with discussion of major disease challenges.

Speaker: Michelle Witkop, DNP, FNP-BC

 

VWD and Your Child

Raising a child can be challenging and raising a child with VWD can create additional challenges. This session provides information from a nurse’s perspective and opportunities to ask questions about your own challenges.

Speaker: Amanda Kinker, RN

 

Ask a Camper

Camp is a big part of fostering independence, gaining knowledge and confidence. Hear from young adults who assist with running Camp Bold Eagle and can answer many of your questions about HFM’s summer camping program.

Speakers: Brad Medrano; Kevin Young

 

IEPs/Sharing Diagnosis

Navigating the education system while managing your child’s diagnosis can be challenging. An HTC social worker will walk you through this process and give you tips about sharing your child’s diagnosis.

Speaker: Lynn Vanderwal, LMSW

 

Immunization Discussion

For some families, vaccinating their children isn’t always a done deal. This session will be an open discussion about parents’ concerns regarding childhood vaccinations.

Speaker: Amy Hepper, M.D., Medical Director, Camp Bold Eagle and University of Michigan Pediatrics, C.S. Mott Children’s Hospital

 

A Daily Dose of Distraction

This roundtable will focus primarily on ways to enhance patient coping with pain/discomfort/procedures using distraction techniques such as playing games, engaging in relaxation and maintaining comfort measures. Whether you are a parent, friend, caregiver or patient come learn

how distraction may benefit you.

Speakers: Stephanie Katke, CCLS; Jessica Jarvis, CCLS, CFLE-P

 

Reflection & Remembrance

Conference Room H

Please stop by for reflection and remembrance anytime throughout the day.

 

Focus groups for Community Input

Limited to 10 people per session

Boardroom (Please sign up in the HFM Resource Room, prior to start of session.)

Receive a $5* gift card by answering questions and sharing

your opinions about your involvement in HFM. All responses are anonymous – the facilitator will not share any names

of participants. *Stay for the full 75 minutes, & receive a

$5 gift card to Target. Must be 18 and over, and may only

attend one focus group.

Facilitator: Michael Craciunoiu, Senior Director of Chapter

Development, NHF

 

Medical Sessions

Auditorium 1

 

1:45-2:20pm Bayer

Hemophilia Pipeline Presentation

Speaker: Scott G. Cazier, Medical Science Liaison,

Hematology, Bayer

 

2:25-3pm Shire

ADYNOVATE New Indications Overview – For Use in Children Under 12 and Surgery

Speaker: Erin Weigel, MSN, RN, CPN, Senior Clinical

Specialist, US Hematology Franchise, Shire                                     13

 

3-3:15pm Break – Snacks

Conference Center, look for signage

 

 

3:00-3:15pm Break 

 

3:15-4:30pm  Sessions #3

 

You’ve got This: The Art of Speaking up

Conference Room B

People with bleeding disorders and caregivers often educate schools, workplaces, health care teams and communities to ensure the right care and support to thrive. The Hemophilia Experiences, Results and Opportunities (HERO) study found that while many people are satisfied with support from partners, friends and family, a major roadblock to support from others was lack of knowledge about bleeding disorders. This module offers insight and sample scenarios on how to educate others and ask for support in areas such as education (including 504 plans and IEPs), the workplace, social life, dating, sports, child care, and health care.

Speakers: Javey Dallas, MSW, LCSW, Social Worker, University of Oklahoma HTC; Cathy M. Tiggs, MSSA, LISW, Social Worker, Cleveland, Ohio

 

PEP: Parents Empowering Parents, an Introduction

Conference Room C

Interactive opportunities for parents to take home effective disciplinary techniques which will help them better manage their children’s behaviors, especially their child with a bleeding disorder.

Speakers: Becky and Bryan Eckstein, who have a 5 year old child with Hemophilia B; Danna Merritt, MSW, LMSW, creator and author of the Parents Empowering Parents (PEP) Child Management Program which has been empowering parents in the bleeding disorders community for over 20 years.

 

Spotlight on the unaffected Sibling

Conference Room D

Raising multiple kids can have plenty of ups and downs, especially if one child has a chronic disease like a bleeding disorder. Sometimes balancing the needs of the child without a bleeding disorder can be a challenge. This workshop empowers parents and caregivers with new tools to ensure that each child’s needs are met.

Speaker: Becky Ybarra, Community Relations Manager, Bioverativ

 

Teens Team Building Activities

Conference Room E, until 4pm

 

Aquatic Fitness for Men

Hotel Swimming Pool (Follow signage. Elevator to

lower level, turn right. Bathroom and locker room available. Extra swim trunks are also available.)

Have fun in the pool & learn how to use water resistance

to get a great workout.

Facilitator Dr. Michael Zolotnisky, PT, DPT

 

Roundtable Discussions 3

Opportunity to have small group discussions, two topics

per breakout session.

Auditorium 2

 

grandparents

Grandparents can play an important role in the lives of grandchildren with a bleeding disorder. We’ll highlight the real, lived experience of grandparents, and the challenges and joys of caregiving.

Speakers: Kathy and Dennis Monach; Lisa Clothier, LLMSW

 

Co-pays, Insurance and Patient Assistance Programs The world of insurance, co-pays, and patient assistance programs can be very overwhelming. Get your questions answered and find out where you can go for help.

Speaker: Ellen Kachalsky, LMSW                                                   15

 

Emergency Room Visits – Larger Institutions

For those who live near larger hospitals.

Are you prepared for an emergency with a bleeding disorders patient? It might be us, our child or partner. Learn how to be prepared for a trip to the ER, what to bring with you and how to advocate for yourself and family members.

Speaker: Linda Percy, RN, MSN, CPN

 

Emergency Room Visits – Smaller Institutions

For those who live near hospitals in rural communities and small towns.

Are you prepared for an emergency with a bleeding disorders

patient? It might be us, our child or partner. Learn how to

be prepared for a trip to the ER, what to bring with you

and how to advocate for yourself and family members.

Speaker: Matt Shullick, MPH, MHSA, MS, FNP-C

 

A Daily Dose of Distraction

This roundtable will focus primarily on ways to enhance patient coping with pain/discomfort/procedures using distraction techniques such as playing games, engaging in relaxation and maintaining comfort measures. Whether you are a parent, friend, caregiver or patient come learn

how distraction may benefit you.

Speakers: Stephanie Katke, CCLS; Jessica Jarvis, CCLS, CFLE-P

 

Ask The nurse

Receiving a new diagnosis for yourself or your child can be overwhelming. In this session, an HTC nurse will help you understand your/your child’s bleeding disorder and the next steps in providing care.

Speaker: Cindy Brown, RN

 

Dental: Did you know?

Finding a dentist when you have a bleeding disorder can be challenging. This roundtable discussion will give you

practical tips to navigate this complicated system.

Speaker: Karen Ridley, MSDH

 

Ask a Camper

Camp is a big part of fostering independence, gaining knowledge and confidence. Hear from young adults who assist with running Camp Bold Eagle and can answer many of your questions about HFM’s summer camping program.

Speakers: Brad Medrano; Kevin Young

 

Reflection & Remembrance

Conference Room H

Please stop by for reflection and remembrance anytime throughout the day.

 

Medical Sessions

Conference Room F

 

3:15-3:50pm Alnylam

A Potential New Approach for Preventing Bleeds in People with Hemophilia

Speaker: Gar Horgan, PharmD, Alnylam Medical Science

Liaison, Medical Affairs

 

3:55-4:30pm grifols

Inhibitors and SIPPET study about prevalence of Inhibitors: A look into Inhibitors, and the recent SIPPET study on Inhibitors and Plasma Safety

Speaker: Wilton Rodriguez, Medical Science Liaison

 

4:30-5:30pm  affinity Groups

Less structured conversations!

 

Carriers: My untold Journey

Conference Room A

We’ll focus on female carriers and the importance of having your voice be heard. This informational discussion will allow participants to share their history, stories and feelings on what it means to be a carrier.

Facilitators: Dave Rushlow, LMSW; Karen Boyd, LMSW

 

Men 50+

Conference Room B

This discussion group is for men over 50 years old to talk about their challenges and successes.

Facilitator: Ellen Kachalsky, LMSW

 

grandparents

Conference Room F

Grandparents can play an important role in the lives of grandchildren with a bleeding disorder. We’ll highlight the real, lived experience of grandparents, and the challenges and joys of caregiving.

Facilitators: Jim and Linn Wilson; Lisa Clothier, LLMSW

 

glanzmann/Platelet Disorders

Conference Room D

The basics of these diagnoses will be outlined, along with discussion of major disease challenges.

Speaker: Michelle Witkop, DNP, FNP-BC

 

Von Willebrand Disease

Conference Room C

Join our discussion about the challenges of living with VWD.

Facilitator: Jennifer Luitje, RN

 

5-5:30pm Children’s Pick-up

• 0-4 in Elizabeth Ann Ballroom (near elevators, hotel lobby)

• 5-12 in Auditorium 1

• 13-17 will be released from Auditorium 1

 

5:00pm  Pick up all youth 5 and up in Auditorium 1; 0-4 in Conference Room H

 

6pm Dinner

Wilbanks Ballroom

➤ Summer is Coming! Camp Bold Eagle presentation

Tim Wicks, Camp Director/HFM Youth Services Manager; Torey Allen, HFM Educational Services Manager/Associate Camp Director

 

7pm Membership Meeting

Wilbanks Ballroom

Speaker: Rob Hopper, HFM Board President

Speaker: Susan Lerch, Outgoing HFM Board Recognition

 

7:30-10pm Evening Activity: Shire’s Family Carnival Exclusive sponsor: Shire

Conference Center Atrium & Lobby

 

9-11pm  Industry Educational Suites

■   Bioverativ, Conference room E

■   CSL Behring, Conference room B

■   Genentech, Seminar room 5

■   Pfizer, Conference room D

■   Shire, Conference room A


 

Sunday, April 23, 2017

 

8-9am Light Breakfast, Roy E. Wilbanks Ballroom

 

9:15-10:30am  Sessions #4

ATHn & Community Counts: You Can Make a Difference

Conference Room D

Community Counts is happening at hemophilia treatment centers (HTCs) nationwide. Information is being collected about common health issues, medical complications like inhibitors and joint bleeds, and the impact of bleeding

and clotting disorders on people receiving care in feder- ally funded HTCs. Free annual inhibitor testing is included allowing early intervention. Plus learn more about ATHN’s safe and secure national patient health data resource—the ATHNdataset—a vital community resource with more than

33,000 patients across the country participating.

Speaker: Becky Dudley, LCSW, Director of National

Surveillance for ATHN                                                                             19


Healthy Eating Made Simple

Conference Room C

Eating healthy and living a healthy lifestyle can be fun and exciting. By following these five simple tips, you can start living a balanced, nutritious life today!

Speaker: Emily Redder, RDN

 

Science is Real (For ages 8-12, yet all ages welcome)

Conference Room E

Comprised of fun, interactive activities that demonstrate two scientific concepts. Come prepared to be amazed by scientific predictions and testing. An adult must accompany each child and be willing to help them in the activities.

Speaker: Megan Procario

 

HFM Camp Open House: Everything You Want to know

Auditorium 2

Ask questions or just have fun playing games!

Facilitators: HFM’s Tim Wicks & Torey Allen

 

10:45am-12pm Brunch and Closing Activities

Wilbanks Ballroom

Speaker: Jim Redquest, Hemophilia, Community Clinical

Educator, Team Area Manager, West, Genentech

 

RAFFLE DRAWIngS: You must be present Sunday morning to win.

Prizes include: Trips to NHF & HFA, gift cards!