Symposium agenda - Hemophilia Federation of America

Transcription

THANK YOU
To Our 2015 Symposium Sponsors
Platinum Level | $95,000+
Baxter International
www.nava.baxter.com
Bayer Healthcare
www.bayer.com
Biogen Idec
www.biogenidechemophilia.com
Novo Nordisk
www.novonordisk-us.com
Gold Level | $50,000+
CSL Behring
www.cslbehring.com
Kedrion Biopharma
www.kedrionusa.com
Pfizer
www.pfizer.com
Silver Level | $25,000+
Octapharma
www.octapharmausa.com
Grifols USA
www.grifols.com
15,000+
Bronze Level | $5,000+
Alnylam Pharmaceuticals
www.alnylam.com
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Symposium 2015 | Gateway to a Stronger Community | #HFA2015
TABLE OF CONTENTS
2015 Symposium Sponsors. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2
Special Thanks . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
Welcome. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
Exhibit Hall | 2015 Exhibitors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
Hotel Map/Meeting Rooms. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7,8
Registration/Information. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8
Children/Teen Programming . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
Wellness Lounge Activities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
Art Factor . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
Thursday, March 26th. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12-13
Friday, March 27th . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14-15
Saturday, March 28th. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16-19
HFA Programs: Breakout Sessions. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16
HFA Volunteers. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20
HFA Board of Directors & Member Organizations . . . . . . . . . . . . . . . . . . . . . . . . . . 20
HFA Staff . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21
Our Sponsors. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22-29
BE SOCIAL!
Follow us on Facebook, Twitter, and Instagram
@hemophiliafed
When you post pictures of Symposium be sure to use
#HFA2015
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SPECIAL THANKS
Our special thanks to those that helped
make this meeting possible!
Symposium Planning
Committee 2015
Our Symposium Partners & Hosts
Kari Atkinson (Co-Chair)
Staff at the Hyatt Regency at the Arch
Linda Wyman-Collins (Co-Chair)
Teen Volunteers
Bridget Tyrey
Chad Stevens
Christopher Walsh
Danielle Flores
Darcy Zwier
Dave Robinson
Detrice Berry
Donnie Akers, Jr.
James Setliff
Jill Packard
Judy Igelman
Lesa Kaercher
Gateway Hemophilia Association
John Newman
Alex Ell
Shelly Mattson
Donald “Ziggy” Douglas
Ashley Hill
Sidney Watson
Children’s Program Volunteers
Accent on Children’s Arrangements, Inc.
Judy Igelman
Mona Constantini
Tabby Mayhan
Special Guest
Tracy Cleghorn
Jan Hamilton
HFA Ambassadors
Travel Arrangements
Carlos Ruiz
KR Events, Washington, DC
Chad Stevens
Josh Hemann
Kari Atkinson
Lesa Kaercher
Liliana Ruiz
Linda Wyman-Collins
Lori Long
Scott Boling
Sharon Ingram
Sonji Wilkes
Tracy Cleghorn
Wendy Chou
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HFA gratefully acknowledges a contribution of $25,000
from the Colburn Keenan Foundation, Inc. which supported education travel grants specifically for return attendees to Symposium! HFA was able to provide grants
to an additional 30 individuals and families through this
generous donation. Thank you to all at Colburn – Keenan
for enabling these attendees to experience yet another
year at Symposium!
About Colburn – Keenan Foundation, Inc.
A charitable organization dedicated to improving the
health and wellbeing of individuals and families living
with chronic illnesses, with priority placed on those
living with bleeding disorders. Find out more at:
www.colkeen.org
Dear Friends and Families,
WELCOME
and thank you for attending Symposium 2015! We are
excited to be back in St Louis and that you are here to
share the weekend with us! It’s an exciting time for HFA as we continue to grow and change.
We are your community-focused organization and your participation is vital to our success!
HFA welcomes and appreciates your calls, comments, and posts through the year. Those connections help to keep our programs, services, and advocacy work relevant and focused on our
community. Please continue to bring suggestions and new ideas our way so we can continue
to best serve you.
We are thrilled that our member organization in the St Louis area, Gateway Hemophilia Association, is combining their annual meeting with Symposium. By working together, we know
this will be the best meeting ever! We are pleased to offer you over 30 sessions of education
and peer community support. We also invite you to say thanks as you visit with the 47 product
and service providers in the exhibit hall. Their support helps make this meeting possible.
Our theme this year is Gateway to a Stronger Community. Each and every one of you has an
opportunity to build a stronger community by:
• BEING INVOLVED. This weekend you will have the opportunity to network with
hundreds of other individuals and families from around the country to gain valuable knowledge, advocacy resources, and support from your national community
organization. Use the time to your advantage!
• ASKING QUESTIONS. Be sure to actively participate in sessions. There is a full
lineup of HFA programming, advocacy, and peer rap sessions. Tour the exhibit hall
and learn what our sponsors and vendors have to share.
• TAKING ACTION. Attending this meeting is the first step. As you head home, we
challenge you to take what you learn from our meeting to help your local community continue to grow.
Thank you for joining us and we look forward to an excellent Symposium. Enjoy the meeting!
Warm Regards,
Kimberly Haugstad, MBA
Executive Director
Tracy Cleghorn
HFA Board President
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Exhibitor Booths
1. Novo Nordisk
3. Soleo Health
4. Hemophilia Alliance
5. The Alliance Pharmacy
6. Emergent BioSolutions
7. BioRx
8. Comprehensive Bleeding
Disorders Center
9. Brothers Healthcare
10. American Homecare Federation
11. Alnylam Pharmaceuticals
12. Affinity Biotech
13. Grifols
14. Patient Services, Inc.
15. Accurate Rx Pharmacy
16. Baxter
18. Kedrion Biopharma
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19. HPC Specialty Pharmacy
20. Walgreens Infusion Services
21. ARJ Infusion Services
22. W
orld Federation of
Hemophilia USA
23. Axiom Therapeutics, LLC
24. Bioscrip
25. P
lasma Protein Therapeutics
Association (PPTA)
26. CVS Caremark Specialty Pharmacy
27. Pfizer
28. Factor Support Network
29. Matrix Health Group
30. Biogen Idec
32. Cottrill’s Pharmacy, Inc.
33. Accredo
34. CSL Behring
35. Octapharma
36. American Thrombosis &
Hemostasis Network
37. Homecare for the Cure
38. Galen US, Inc.
39. AxelaCare Health Solutions
40. Specialty Therapeutic Care
41. BioEthics Advantage
42. Superior Biologics
43. Ethical Factor Rx, LLC
44. NCHS
45. Bayer HealthCare
52. Hemophilia Federation of America
53. Gateway Hemophilia Association
54. The Coalition For Hemophilia B
55. National Hemophilia Foundation
56. Reduce Inhibitor Development
(RID)
(ART FACTOR)
Exhibit
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REGISTRATION/INFORMATION
Registration/Information Hours | Grand Foyer
Thursday, March 26th | 9:00 a.m.—5:00 p.m.
Friday, March 27th | 9:00 a.m.—5:00 p.m.
Saturday, March 28th | 9:00 a.m.—12:00 p.m.
Infusion Suite | Sterling Studio 8
Note: Please call the number posted on the Infusion Suite door to schedule an infusion with a nurse.
Nurse Volunteer: Linda Wyman-Collins, BSN, RNC-NIC
Thursday, March 26th | As needed
Friday, March 27th | As needed
Saturday, March 28th | As needed
Scooters & Wheelchairs | Registration
SPONSORED BY BAXTER
The hotel is wheelchair accessible. HFA has a small number of wheelchairs and scooters available during
the meeting. Please stop by the registration desk for more information.
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KIDS & TEENS
Children’s Program | Mills Studio 1-9
(Infants, 6 months—12 years)
Children will spend two days participating in fun activities using motor skills, games, stories, songs, and crafts.
Professional caregivers have been trained in the care of children with bleeding disorders. Please be sure your child
is checked in prior to departure times so they may enjoy these activities!
Note: For safety reasons, we do not release the children’s itinerary in advance. The full program will be provided on-site
for parents and available at registration.
Reminder: Keep in mind childcare closing times. Please be respectful of caregivers and pick up your children at
these times.
DAYREGISTRATION
CHILDCARE
Thursday, March 26th
10:30 a.m.—11:00 a.m.*
12:00 p.m.—5:00 p.m.
11:00 a.m.—5:00 p.m.*
Friday, March 27th
8:00 a.m.—12:00 p.m.
9:00 a.m.—5:00 p.m.
Saturday, March 28th
Registration closed
9:00 a.m.—5:00 p.m.
*Inhibitor attendees only
Teen Connection | Gateway East
SPONSORED BY OCTAPHARMA
The teens (ages 13-17) will participate in a program centered around being an advocate for themselves and for the bleeding disorders community. Throughout their sessions, teens will focus on self-assurance and team building activities to
help them become better independent advocates. Teens will discuss the benefits and risks of disclosing a bleeding disorder as well as how educating others can benefit the entire bleeding disorders community.
Please be sure your teen is checked in prior to departure times so they may enjoy these activities!
DAY
REGISTRATION
TEEN PROGRAM
Thursday, March 26th
10:30 a.m.—11:00 a.m.*
11:00 a.m.—5:00 p.m.*
Friday, March 27th
8:00 a.m.—12:00 p.m.
9:00 a.m.—5:00 p.m.
Saturday, March 28th
Registration closed
9:00 a.m.—5:00 p.m.
*Inhibitor attendees only. There will be no teen program on Thursday,
however teens are welcome to join the scheduled children’s program.
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tor
Wellness Lounge
Schedule of Activities
Be sure to stop by our FitFactor Wellness Lounge for
a chance to learn about healthy activities from our
guests who are experts in the fields of yoga, personal training, and martial arts. Then treat yourself to a
relaxing free massage. Our resident FitFactor guru,
Janet Chupka, will also be on hand to greet you
and answer questions about our popular FitFactor
program.
The FitFactor Wellness Lounge is located in the
Grand Ballroom Foyer, just outside of the Exhibitor
Hall, on the 4th Floor.
About Our Sessions and Instructors
Martial Arts Instructor
Michael Pezzillo is a Chief Instructor for Rhode Island’s
Mastery Martial Arts. Having trained in the martial arts for
nearly two decades, Michael is thrilled to bring the arts to the
bleeding disorders community. Michael has seen firsthand how
martial arts builds confidence in students of all ages, races, and
physical ability. Michael’s two brothers, Rich and Anthony, are
both affected by hemophilia.
Michael is available to answer your questions about martial arts and provide a brief
demonstration.
Yoga Instructor
Corey Pierce is a registered yoga instructor who has long been
involved with the hemophilia community. He has worked in
both in small group settings and at summer camp teaching
yoga to parents as well as patients of all ages. Corey has seen
the benefits of yoga for himself, having explored the sport to
recover from an ankle fusion.
Thursday, March 26
5:30 p.m.—7:30 p.m.
• 10-min Chair Massage – Massage Envy
• Yoga Instructor – Corey Pierce
• Personal Trainer – Michelle Morath
• FitFactor Program Info – Janet Chupka
Not only is Corey available to answer your questions and offer
instruction, but he will be leading a men-only chair yoga session on Friday at 9:00 a.m.
and the Rise & Shine yoga session Saturday morning at 7:00 a.m., that you are encouraged to attend!
Friday, March 27
Personal Trainer
9:30 a.m.—11:00 a.m.
Certified Personal Trainer Michelle Morath is the owner of
Albuquerque, New Mexico’s JourneyFit, LLC. Specializing in
post-rehabilitation, older adults, and pain management, Michelle designs individualized workouts tailored to meet each
patient’s needs. Michelle strongly believes that, through proper
exercise and nutrition, anyone can improve their quality of life.
• Personal Trainer – Michelle Morath
5:00 p.m. —7:00 p.m.
Michelle is available to answer questions about fitness & exercise, helping to adapt it to your specific needs. Michelle will be leading Rise & Shine
sessions on both Friday and Saturday mornings at 7:00 a.m., and would like you to join!
• Yoga Instructor – Corey Pierce
• Martial Arts Instructor – Michael Pezzillo
Saturday, March 28
12:00 p.m.—1:30 p.m.
Chair Massage
Take a break and stop by our FitFactor Wellness Lounge for a relaxing massage from Massage Envy Webster Groves! Licensed
massage therapists from one of the nation’s leading massage
therapy clinics will be offering 10 minute chair massages on a
first come, first served basis. These sessions are sure to be in
high demand, so come early! (Adults 18 and over only, please)
FitFactor Program
• Martial Arts Instructor – Michael Pezzillo
Janet Chupka, RN, BSN, HFA Programs Manager, has been
leading HFA’s FitFactor Program since 2011. Janet knows that
healthier bodies bleed less, and has been living this mantra for
years. Janet is responsible for all of the great stories that you
read, as well as all of the wonderful recipes and activity ideas
that we share online and in Dateline Federation!
Stop by to talk with Janet about our FitFactor program and
discover some of the great new projects and plans that we
have to offer this year!
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Presented by FOLX
in collaboration with HFA
Images that represent the bleeding
disorders community can currently be
found in numerous strategic formats.
From pharmaceutical exhibition displays to direct mailings, these initiatives attempt to interpret our everyday
lives and then mirror those experiences back to us. While, admittedly, most
campaigns are thoughtfully developed, they still aim to serve tactical
commercial goals aimed at our specific target audience.
FOLX pays close attention to the different messages these images send
to the community and how, as a community, we navigate these messages
in both the public and private spaces
of our bleeding disorders. FOLX wonders how the current state of “Bleeder
Image Culture” can more authentically and effectively be portrayed.
(Art Factor) is an exhibition of artworks in response to this concern. Featuring bodies of work produced within
the community, (Art Factor) provides
an intimate look at how the artists use
images to process and communicate
the bleeding disorders experience. Additionally, for those enrolled in HFA’s
Symposium Youth Program, the exhibition includes an interactive opportunity to create their own artwork
on-site and to formally display their
creativity alongside the artists. Make
sure to revisit (Art Factor) throughout
Symposium to see the exhibition grow
and witness the evolution of our image
culture!
(ART FACTOR) Youth Program
Presented by FOLX in collaboration with HFA
In this session, we’re going to make an awesome display of collaborative community art for the (Art Factor) exhibition. The Youth Program will initially cover
fundamental benefits to art-making that include creativity as a method for selfexpression and as a tool for coping. A group exercise will brainstorm what kinds of
images each might use to express their unique experiences within the community.
Then, let’s make some art! All artworks will be on display in the exhibition!
(ART FACTOR) From The Source: Panel Discussion
Presented by FOLX in collaboration with HFA
Participating artists from the (Art Factor) exhibition will speak to the role bleeding
disorders have played in their creative process. Panelists will correlate how this
influence is specifically seen in their artworks on display in the exhibition and
share other images from their art practice. Further, FOLX will lead a conversation
on the importance of image representation and how our community can work to
reclaim our image culture.
(Art Factor) Contributors:
Billy Conde Goldman
Billy Conde Goldman (a bleeder) is an artist living and working in St. Paul, Minnesota. His most recent
project, a collaboration with fellow artist Bob Lordan (not a bleeder), is entitled prayer for civilization,
which consists of 64 paintings corresponding to the hexagrams of the i ching. He celebrates DIY
approaches to living life and believes creativity is available to all, notwithstanding experience, skill, or
talent.
Daniel McCully
Daniel McCully is a photographer, husband, and father of two from Kingston, Ontario, Canada. His son
Felix was born with severe hemophilia A and later developed an inhibitor. Over the last 4 years he has
used his camera to document the journey through birth, ITI therapy, bleeds, and prophylaxis, capturing
the everyday activities of an average family who just happens to be living with hemophilia.
Tim Andrews
Tim Andrews creates paintings that explore issues of identity and self-representation as self-expression. His work chronicles the personal and societal ramifications of having lived for 54 years as a
person with hemophilia, and having lived thirtyplus-years with HIV and HCV. His self-portraits are
a record of how he journeys through this reality and
speaks to an unwavering will to survive. He lives in
Tennessee.
Justin Levesque
Justin specializes in the critical analysis of images
and their impact on social norms and community
expectations. He lives in Portland, Maine where he
runs his own design studio, Shop Geometry. He
also serves as Creative Director for The Hemophilia
Alliance of Maine and is Co-Director of the FOLX
program, which celebrates and acknowledges
creativity in the bleeding disorders community.
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THURSDAY | MARCH 26TH
BOARD OF DIRECTORS/EDs
Board of Directors Breakfast | Gateway East
7:30 a.m.—8:00 a.m.
Board Meeting | Gateway East
8:00 a.m.—12:00 p.m.
Board & Executive Directors Lunch
| Gateway West
12:00 p.m.—1:30 p.m.
Board & Executive Directors:
Truth and Transparency, Urban Myths
| Gateway East
1:30 p.m.—3:30 p.m.
INHIBITOR TRACK
Welcome & Sponsor Talks | Park View
12:00 p.m.—12:20 p.m.
Promising Research & Products for Inhibitors
| Park View
12:30 p.m.—1:30 p.m.
Shannon Meeks, MD
Note: This is a closed session for families with inhibitors
only. Pre-registration required.
Break
Track sponsored by: Baxter, Grifols, Kedrion Biopharma
What? Me, Worry?! | Park View
Inhibitor Attendees Breakfast | Park View
1:45 p.m.—2:45 p.m.
Dave Robinson, PhD, LMFT
9:30 a.m.—10:30 a.m.
Attendees should register prior to breakfast
Childcare Drop-off (Inhibitor Attendees Only)
| Mills 6
Registration: 10:30a.m.—11:00 a.m.
Drop Off: 11:00 a.m.—11:30 a.m.
Lunch Pick-Up | Park View
11:30 a.m.—12:00 p.m.
1:30 p.m.—1:45 p.m.
RID (Reduce Inhibitor Development) Update
| Park View
2:45 p.m.—3:15 p.m.
Debbie Porter, Parent/Founder of RID
Past, Present, & Future of Inhibitor
Prevention & Treatment | Park View
3:15 p.m.—4:00 p.m.
Chris Walsh, PhD, MD; Shannon Meeks, MD;
Dave Robinson, PhD, LMFT; Mike Soucie, PhD;
Sue Geraghty, RN; Debbie Porter, Parent/Founder of RID
Inhibitor Rap Session | Park View
4:00 p.m.—5:00 p.m.
Cazandra MacDonald
Childcare Pick-up (Inhibitor Attendees)
| Mills 6
5:00 p.m.—5:30 p.m.
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THURSDAY | MARCH 26TH
GENERAL SESSIONS
Registration | Grand Foyer
9:00 a.m.—5:00 p.m.
Childcare Registration | Mills 6
10:30 a.m.—11:00 a.m. for inhibitor families only
12:00 p.m.—5:00 p.m. for all other attendees
Navigating the Conference | Grand Ballroom B & C
3:00 p.m.—5:00 p.m.
Janel Johnson-Momanyi, HFA Advocacy and Programs
Manager; Lauren Neybert, HFA Associate Director of
Programs
This session was created at the suggestion of HFA Symposium attendees with the purpose of welcoming, engaging,
encouraging, and supporting families who are attending the
HFA Educational Symposium for the first (or second) time.
HFA recognizes the need to provide networking opportunities for individuals and families. We understand that, for many
families, HFA’s Symposium is often the first opportunity to
meet with other community members. Our hope is that this
new session welcomes you into the community, connects you
with individuals/parents who have faced the same challenges,
helps you navigate the conference, and gives you an opportunity to have discussions with HFA Ambassadors throughout
the conference.
(Art Factor) Exhibit | Regency Ballroom Foyer
Open throughout Symposium
(Art Factor) is an exhibition featuring bodies of work produced
within the community. (Art Factor) provides an intimate look
at how the artists use images to process and communicate the
bleeding disorders experience. Additionally, for those enrolled
in HFA’s Symposium Youth Program, the exhibition includes
an interactive opportunity to create their own artwork on-site
and to formally display their creativity alongside the artists.
Make sure to revisit (Art Factor) throughout Symposium
to see the exhibition grow and witness the evolution of our
image culture!
Industry Dinner: Biogen Idec
| Regency Ballroom D-F
7:30 p.m. – 9:30 p.m.
Note: This session’s content is provided by industry.
Join Biogen for an exciting educational event called Viewpoints. Hear from a peer speaker and learn more information
about their products. Afterwards, enjoy the premier of
“Outside In”, a fully immersive video experience about the
science behind Fc Fusion technology!
Inhibitors: What You Need to Know
| Grand Ballroom F & G
4:00 p.m.—5:00 p.m.
Sue Geraghty, RN
It’s the most feared complication currently in hemophilia – the
development of an inhibitor. This session, open to all Symposium attendees, will provide a basic overview of what it means
to have an inhibitor, the risk factors for development, the
challenges of inhibitor treatment and bleeding management,
and general daily life.
Exhibit Hall + Wellness Lounge
| Grand Ballroon D & E + Foyer
5:30 p.m.—7:30 p.m.
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FRIDAY | MARCH 27TH
EXECUTIVE DIRECTOR SESSIONS
Executive Directors: Best Practices
& Great Results! | Grand Ballroom G
8:00 a.m.—10:00 a.m.
Executive Directors:
HFA Advocacy, Communications, & Programs—
How It Works & Why!
| Grand Ballroom G
10:45 a.m.—11:45 a.m.
GENERAL
Rise & Shine Physical Activity
| Grand Ballroom C
Children's Programming | Mills Studio 1-9
9:00 a.m.—5:00 p.m.
Teen Programming | Gateway East
9:00 a.m.—5:00 p.m.
Bleeding Tendency in Hemophilia Carriers
(Adult Women Only) | Grand Ballroom B
9:00 a.m.—10:00 a.m.
Robert Sidonio, Jr., MD
Dr. Sidonio will discuss the diagnostic challenges in hemophilia carriers and the current guidelines for the optimal management of menstrual, obstetric, and other bleeding challenges throughout the lifespan of a hemophilia carrier. In addition,
he will discuss recently published data demonstrating an
increased bleeding tendency in hemophilia carriers and
exciting new studies further investigating this new finding.
7:00 a.m.—8:00 a.m.
Michelle Morath
| Grand Ballroom D & E + Foyer
Join Certified Personal Trainer Michelle Morath as she leads
the group through an invigorating yet gentle workout that can
be replicated at home without the use of any special equipment. This workout is great for those who don’t have a lot of
time or money for the gym, but still want to strengthen and
tone their muscles. These exercises are adaptable and can be
modified to meet all levels and abilities of attendees.
9:30 a.m.—11:00 a.m.
Breakfast | Regency Ballroom D-F
7:30 a.m.—9:30 a.m.
Chair Yoga (Adult Men Only) | Grand Ballroom A
9:00 a.m.—10:00 a.m.
Corey Pierce
Tired of your same old fitness routine? Looking for something
that will help get you re-energized and focused? Gentlemen,
look no further! Join us for this guys-only invigorating, yet
gentle yoga workout. If you’re intimidated by the idea of taking a yoga class, worry no more. Chair yoga allows all individuals, even those with special considerations like chronic pain
or fatigue, the opportunity to safely participate in and benefit
from the art of yoga. You can try this gentle style of yoga using
a chair for support. This series of movements and breath work
will revitalize you and help strengthen muscles and joints and
build flexibility. Back by popular demand!! Try it out! Please
wear comfortable clothing.
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Be Involved…Ask Questions… Take Action!
| Park View
10:15 a.m.—10:45 a.m.
Kimberly Haugstad, HFA Executive Director; HFA Staff
Join us for a glimpse of some of the many ways you can be
involved and take action! Meet and greet HFA staff while
learning how you can get involved and stay connected. This
brief introductory session will be immediately followed by
specific program area meet and greet sessions allowing you
to connect with fellow Dads, Moms, Blood Brothers, and Blood
Sisters. Please join us to learn how you can be involved as well
as hear more about Symposium sessions you just won’t want
to miss!
Blood Brothers and Spouses
(Small Group Welcome Session) | Grand Ballroom A
10:45 a.m.—11:45 a.m.
Blood Sisters (Small Group Welcome Session)
| Grand Ballroom B
10:45 a.m.—11:45 a.m.
FRIDAY | MARCH 27TH
Families (Small Group Welcome Session)
| Grand Ballroom C
Refreshment Break | Regency Foyer
10:45 a.m.—11:45 a.m.
Sponsored by Alnylam Pharmaceuticals
3:45 p.m.—4:00 p.m.
Break
Remembrance Service | Park View
11:45 a.m.—12:00 p.m.
4:00 p.m.—5:00 p.m.
Greg McClure, MS, MA, LSW
Gateway to a Stronger Community
(Welcome Luncheon) | Regency Ballroom A-C
12:00 p.m.—2:00 p.m.
Join us as we celebrate and remember friends and loved ones,
both living and departed.
Be sure to join us for a message of hope, including a discussion of ways we can work together to build a stronger community through personal involvement as well as identifying ways
to give back.
| Grand Ballroon D & E + Foyer
Break
Industry Dinner: Baxter | Regency Ballroom D-F
2:00 p.m.—2:15 p.m.
Advocacy: See It! Learn It! Do It!
| Regency Ballroom A-C
2:15 p.m.—3:45 p.m.
Katie Verb, HFA Advocacy & Government Relations
Manager; Wendy Owens, HFA CHOICE Project Manager;
Stephen Fitzmaurice, HFA Communications & Policy
Coordinator
This session will introduce advocates to new ways of participating in advocacy at the local level. Advocates will learn the basics
of working with their local organizations in advocacy efforts,
basic tips and skills for participating in their local legislative
days, and tips and tricks for speaking to legislators. Participants
will also have an opportunity to write their own personal elevator speech.
Hepatitis C: Advocacy and Choices for Therapy
| Grand Ballroom A & B
2:15 p.m.—3:45 p.m.
Mark Antell; John Reed, DPH; Christopher Walsh, MD,
PhD; Paul Brayshaw, MPH; Carl Weixler; Steven Walker,
MS; Luisa Stamm, MD, Gilead Sciences; Jim Drew,
Gilead Sciences
Join community advocates, the group People with Bleeding
Disorders and HCV, and medical professionals in the bleeding
disorders community for an update on Hepatitis C treatment
options, clinical trial information, and advocacy efforts for
better access to therapies. Gilead Sciences will also present on
their patient support programs as well as plans for improved
therapies.
5:00 p.m.—7:00 p.m.
7:00 p.m.—9:00 p.m.
Join us as we light the night with activities the whole family
can enjoy.
Family Game Night | Regency Ballroom C
Sponsored by Baxter
9:00 p.m.—11:00 p.m.
Come join the fun! Play a few hands of Texas Hold ‘Em, and
make new friends (no actual money will be used). Puzzles,
board games, and much more will be available for the entire
family to enjoy!
Stop the Bleeding! Season 5 Premiere
| Regency Ballroom B
9:00 p.m.—10:30 p.m.
Patrick James Lynch; Ryan Gielen
Note: This session’s content is provided by Stop the Bleeding!
Stop The Bleeding! is made possible by Baxter.
Join creator/producer/star Patrick James Lynch, director/
producer Ryan Gielen, and other STB! cast members for a
memorable evening of entertainment, featuring a screening
of a BRAND NEW EPISODE from the upcoming season. A
live performance, special guest, and Q & A will round out
this must-attend Friday night event. Open to all community
members.
COTT Meeting | Grand Ballroom C
9:30 p.m.—10:30 p.m.
Note: This session is hosted by the The Committee of
Ten Thousand (COTT).
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SATURDAY | MARCH 28TH
Rise & Shine Physical Activity
| Grand Ballroom B & C
Breakout #2: (Art Factor) From the Source
| Grand Ballroom B
7:00 a.m.—8:00 a.m.
Michelle Morath, Corey Pierce
Note: You can choose either Yoga or Group Workout
9:30 a.m.—10:30 a.m.
Tim Andrews; Bill Conde Goldman; Justin Levesque
Start your day the healthy way by participating in one of our
physical activity sessions. Your choice of an energizing exercise class led by a Certified Personal Trainer, who will lead
you through a workout that can be duplicated at home. Or
choose a more peaceful approach to your morning with the
gentle stretching and deep breathing of Yoga. Both sessions
are adaptable and can be modified to accommodate all levels
and abilities of the attendees.
Industry Breakfast: Bayer HealthCare
Your Journey to Joint Health Through Exercise
| Regency Ballroom D-F
7:30 a.m.—9:30 a.m.
Join Bayer HealthCare on Saturday morning as Jeff Kallberg,
PT, a licensed physical therapist who has hemophilia A, takes
us on a journey toward building stronger, healthier joints
through exercise. Jeff will talk about how your joints work,
how your body moves, and will discuss simple exercises to
help strengthen your joints. You don’t need to travel far to take
part. Breakfast is on us!
Children's Programming | Mills Studio 1-9
9:00 a.m.—5:00 p.m.
Teen Programming | Gateway East
9:00 a.m.—5:00 p.m.
Breakout #1: Insurance Trends
| Grand Ballroom A
9:30 a.m.—10:30 a.m.
Sydney Watson, St. Louis University School of Law
Professor; Katie Verb, HFA Advocacy & Government
Relations Manager
What’s the landscape for insurance in the next few years? How
will this impact Medicaid/Medicare? And what are the trends
regarding Exchange plans? Join us as we discuss these issues
and how they impact the community, while identifying possible advocacy opportunities.
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Participating artists from the (Art Factor) exhibition will speak
to the role bleeding disorders have played in their creative
process. Panelists will correlate how this influence is specifically seen in their artwork on display in the exhibition and
share other images from their art practice.
Breakout #3: Taking Care of You, A Caregiver’s
Perspective | Grand Ballroom C
9:30 a.m.—10:30 a.m.
Sharon Ingram, MS, HS-BCP, CWHC;
Cazandra Campos-McDonald; John Bruno; Carol Reed;
Bill Berger, MS, MSW
The bleeding disorders community is made up of dedicated
caregivers. Moms, dads, partners, spouses, and friends play a
crucial supportive role in their loved one’s well-being. However, caregivers can often feel stressed, overwhelmed, and burnt
out. Join us to hear the perspectives of a mom, dad, spouse,
and social worker in the community to learn how to prioritize
taking care of you while pushing those feelings of guilt aside.
Breakout #4: Connecting the Social Media
Dots 2.0 | Grand Ballroom F
9:30 a.m.—10:30 a.m.
Rich Pezzillo, HFA Communications Director;
Stephen Fitzmaurice, HFA Communications
& Advocacy Coordinator
It’s easy to doubt the power of social media and to write it
off as a waste of time. Building off of last year’s Symposium
session, this interactive presentation will provide attendees
with a more detailed way to safely engage, network, and raise
awareness as members of the bleeding disorders community.
Break | Regency Foyer
10:30 a.m.—10:45 a.m.
On the Horizon | Regency Ballroom A & B
10:45 a.m.—12:00 p.m.
Meg Bradbury, MS, CGC, MSHS; Annette von Drygalski,
MD, PharmD; Dave Robinson, PhD LMFT; Mike Soucie,
PhD; Chris Walsh, PhD, MD
What’s coming down the pike? What can we expect? Why
should we be hopeful? In this session, leading physicians and
researchers will provide an overview and perspective of what
is on the horizon in areas of clinical trials, treatments, and an
eventual cure for bleeding disorders. The session will include
ample time for audience questions and interaction.
Lunch (Exhibit + Wellness Lounge)
| Grand Ballroom D & E + Foyer
Box Lunch Sponsored by CSL Behring, Pfizer,
Kedrion BioPharma
12:00 p.m.—1:30 p.m.
Dear Addy Live! – Making Advocacy Personal
| Regency Ballroom A & B
1:30 p.m.—2:30 p.m.
Katie Verb, HFA Advocacy & Government Relations Manager;
Wendy Owens, HFA Principle Investigator;
Jim Romano, Patient Services, Inc. (PSI);
Michele Guadalupe, Arthritis Foundation
Back by popular demand, this interactive session will address
those personal questions families are having. Panelists will
field questions submitted to “Dear Addy” as well as from those
in the audience about advocacy, policy, and insurance issues.
BLOOD BROTHERHOOD TRACK
Managing Arthritis with Hemophilia:
Prevention and Treatment
| Grand Ballroom A
1:30 p.m.—2:30 p.m.
Annette von Drygalski, MD, PharmD
This session is geared exclusively for adult men with hemophilia and other bleeding disorders, specifically those living with
joint damage and arthritis. Attendees will have the opportunity
to learn about preventative techniques and treatment interventions in the management of arthritis. Questions and interaction
with the presenter is highly encouraged in this session.
Orthopedics: A Hemophilia Case
Study Perspective | Grand Ballroom A
2:30 p.m.—3:30 p.m.
James Luck, Jr., MD
Join this informative session on joint health and repair
in adult males living with hemophilia and other bleeding
disorders. An orthopedic surgeon will inform attendees of
treatment options and therapies through actual case studies
from patients with hemophilia. Attendees are highly encouraged to ask questions and interact with the presenter.
Rap Session | Grand Ballroom A
3:30 p.m.—5:00 p.m.
John Reed and Paul Brayshaw, Blood Brotherhood
Committee Co-Chairs
Back by popular demand! Join other Blood Brothers in this
roundtable discussion. Men from across the country will meet
to network and learn from each other.
*Only open to adult men with a bleeding disorder. No industry
employees allowed, unless you also are an adult man with a
bleeding disorder.
YOUNG ADULTS TRACK
Track Sponsored by Kedrion Biopharma
A Boy, A Girl, Hemophilia, & the Relationship
that Happened Anyway | Gateway West
1:30 p.m.—2:30 p.m.
Shawn Decker; Gwenn Barringer
Since 2000, Shawn Decker and Gwenn Barringer have been
educating together and using their relationship as a way to
show that laughter and honesty are what makes a relationship healthy, regardless of the presence of medical conditions.
They’ve successfully engaged tens of thousands of people,
and have shared their story with millions through Cosmopolitan magazine, MTV, BBC, and HBO films. Join them in a
special presentation exclusively for young adults in the
bleeding disorders community.
Know Your Rights | Gateway West
2:45 p.m.—3:30 p.m.
Donnie Akers, Jr., General Counsel, HFA
Come join this important session to learn about your rights as
an employee with a bleeding disorder and how to advocate for
yourself. Attendees will have the opportunity to learn about the
rights protected by the Americans with Disabilities Act, Reasonable Accommodations, and the Family Medical Leave Act.
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Powering Through | Gateway West
Sponsored by NCHS
3:45 p.m.—5:00 p.m.
Patrick James Lynch
“Stop The Bleeding!’s” Patrick James Lynch hosts a lively
panel conversation with inspiring individuals—from both
within the disorders community and from outside of it—about
the obstacles they’ve had to overcome in their ongoing path
to becoming their best selves. This panel will include the
incredible Lacey Henderson, who lost her leg when she was
a child to a rare soft-tissue cancer but didn’t let that stop her
from pursuing her athletic goals and dreams of becoming a
Division I scholar athlete and American & World Paralympic
record holder. Part of the Young Adult track, but open to all
community members.
BLOOD SISTERHOOD TRACK
Joint Health for Women | Grand Ballroom B
2:30 p.m.—3:30 p.m.
Presentation prepared by Sue Geraghty, RN
In this educational session, women will have the opportunity
to learn about the four basic components of joint health, risk
factors, prevention, and treatment. Developed to address the
particular issues and needs associated with joint health that
women with a bleeding disorder may encounter. A question
and answer portion will be included. A special thanks to Sue
Geraghty, RN, for the development of this presentation.
Communication & Advocacy Strategies
for Women with Bleeding Disorders
| Grand Ballroom B
3:30 p.m.—4:30 p.m.
Katie Verb, HFA Advocacy & Government Relations
Manager; Meg Bradbury, MS, CGC, MSHS
In life, we know that communication is key. For women with a
bleeding disorder, it is even more important. How do we talk
to our physicians, family, friends, bosses, or even co-workers
about what we are feeling and experiencing, and when is the
right time? Katie and Meg will guide women through the process and provide strategies to help women become better communicators. They will follow it up with ways to become a better
advocate for yourself using these communication strategies.
Communication & Advocacy—you can do it, we can help!
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Rap Sessions: Women with Hemophilia/vWD or
other Rare Bleeding Disorders
| Grand Ballroom B/Park View
4:30 p.m.—5:30 p.m.
Linda Wyman-Collins, BSN, RNC-NIC;
Vicki Jacobs-Pratt, MSNPMG
This session will break out into two groups: (1) Women with
hemophilia and carriers and (2) Women with vWD or other
rare bleeding disorders. You will connect and talk to other
women who share similar experiences in this open format,
peer-led session. We will learn about and from one another as
we continue on our journey as Blood Sisters.
*Only open to adult women with a bleeding disorder. No
industry employees allowed, unless you also are an adult
woman with a bleeding disorder.
FAMILIES TRACK
Unique & Normal: Parenting in Bleeding
Disorders | Grand Ballroom F & G
2:30 p.m.—4:00 p.m.
Sonji Wilkes, HFA Programs Manager; Laura Gray, LICSW;
Ziva Mann; John Bruno; Darcy Zwier;
Josh Hemann; Vanessa Flora
Settling into raising a child with a bleeding disorder and learning how to master the skills needed while accepting your family’s new normal can seem like an insurmountable hurdle. This
interactive session includes sharing from families who are
sometimes soaring and sometimes tripping over the hurdles
of acceptance, infusions, and pain. The session will begin with
findings from Laura Gray & Ziva Mann, two of the co-authors
of The Gift of Experience II: Conversations with Parents about
Hemophilia, a collection of stories from parents of children
ages birth-6 years old. A panel of parents (a parent raising a
girl with a bleeding disorder, a parent raising a child with mild
or moderate hemophilia, a parent who’s child has an inhibitor,
and a parent of a child with severe hemophilia) will share where
their experiences have led. While everyone’s journey is different, most families find understanding and guidance from within the bleeding community that can help you and your family.
Rap Session: Moms in Action
| Grand Ballroom F & G
4:00 p.m.—5:00 p.m.
Dawn Evans; Bridget Tyrey; Diane Lima
Join other moms and mother figures in this open format, peerled session that’s a safe spot to talk about what it’s like to raise
a child with a bleeding disorder. Moms of all ages welcome
– whether you have a 3 year old or 39 year old – once you are
in the motherhood, you are a Mom in Action! HFA’s Moms
in Action program provides resources and seeks to increase
connections among mothers – this is a session to learn more,
take action, and get involved. Please join us – you’ll meet
friends for life here.
GENERAL
Break
5:00 p.m.—6:30 p.m.
Final Night Event | Regency Ballroom C-F
Sponsored by Novo Nordisk
6:30 p.m.—11:00 p.m.
Come on out and enjoy the fun! Get ready to Rock Around the
Clock at the Final Night Event! Enjoy 50’s food, music, games,
and entertainment for the whole family! Be sure to dress to
impress in your 50’s best!
*Only open to mothers of a person with a bleeding disorder.
No industry employees allowed, unless you also are a mom of
someone with a bleeding disorder.
Rap Session: Dads in Action | Grand Ballroom H
4:00 p.m.—5:00 p.m.
Stanford Murray; Douglas Hartsough
For dads raising a child with a bleeding disorder, this session
will be an open format that will be led by fathers from within
the community. Participants will learn about HFA’s Dads in
Action program and all the resources we have to offer. This
is your time to connect and network with others and is a safe
place to ask questions and talk about what it’s like for you – the
dad, daddy, father, and papa.
*Only open to fathers of a person with a bleeding disorder. No
industry employees unless you are a dad of someone with a
bleeding disorder.
SPOUSES/PARTNERS
Rap Session: Partners & Spouses
| Grand Ballroom C
3:30 p.m.—5:00 p.m.
Sharon Ingram, MA, HS-BCP, CWHC;
Elaine Chan, MSW/MPH
Are you the partner or spouse of a loved one with a bleeding
disorder? This session is for you! Join a round-table discussion group with other partners and spouses to connect and
share experiences.
*Only open to partners/spouses of a person with a bleeding
disorder. No industry employees allowed, unless you also are
a partner/spouse of someone with a bleeding disorder.
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VOLUNTEERS | BOARD | STAFF
HFA Volunteers
To the many volunteers, activists, and advocates that work with us through the year, we honor and appreciate you.
HFA Board of Directors & Member Organizations
*Does not reflect changes in board after March 1, 2015
EXECUTIVE BOARD
Tracy Cleghorn | Board President
Scott Boling | 1st Vice President
Mark Antell | 2nd Vice President
Douglas Hartsough | Treasurer, Hemophilia Foundation of Northern California
Rea Watson | Secretary, Sangre de Oro Hemophilia Foundation of New Mexico
Diane Lima | New England Hemophilia Association
Mandy McCullough | Connecticut Hemophilia Society
Matthew Compton | Past President
BOARD MEMBERS
John Palmatier. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Alaska Hemophilia Association
Robin Parker. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Hemophilia Foundation of Arkansas
Open Seat. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Arizona Hemophilia Association
Sean Hubbert. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Central California Hemophilia Foundation
Mickey Price. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Hemophilia Foundation of Southern California
Maria Rubin . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Florida Hemophilia Association
Josh Hemann. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Hemophilia of Iowa
Open Seat. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Snake River Hemophilia and Bleeding Disorders Association
Bob Robinson . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Bleeding Disorders Alliance Illinois
Scott Ehnes. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Hemophilia of Indiana
John Redington. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Comprehensive Bleeding Disorders Center
Edgar Guedry. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Louisiana Hemophilia Foundation
Carletha Gates. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Hemophilia Foundation of Maryland
Vicki Jacobs-Pratt. . . . . . . . . . . . . . . . . . . . . . . . . . . . Hemophilia Alliance of Maine
Dawn Evans. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Hemophilia Foundation of Michigan
Aaron Reeves. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Hemophilia Foundation of Minnesota and the Dakotas
Suzanne Sirko-Carney. . . . . . . . . . . . . . . . . . . . . . . . Gateway Hemophilia Association
Sean Jeffrey. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Rocky Mountain Hemophilia and Bleeding Disorders Association
Zack Strange. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Hemophilia of North Carolina
Peter Marcano . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Hemophilia Association of New Jersey
Tom Russomano. . . . . . . . . . . . . . . . . . . . . . . . . . . . . Independent
Wendy Chou. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . New York City Hemophilia Chapter
Stephen Graziano. . . . . . . . . . . . . . . . . . . . . . . . . . . . Mary M. Gooley Hemophilia Center
David Huskie. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Bleeding Disorder Association of Northeastern New York
20
Linda Mugford. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Hemophilia Association of New York, Inc.
Lesa Kaercher. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Bleeding Disorders Association of the Southern Tier
Ray Volney. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Northern Ohio Hemophilia Foundation
John Reed . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Oklahoma Hemophilia Foundation
Stewart Worthington. . . . . . . . . . . . . . . . . . . . . . . . . Hemophilia Foundation of Oregon
Open Seat. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Eastern Pennsylvania Chapter
Derek Flake. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Mid-South Bleeding Disorders Foundation
Suzie Harlan . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Tennessee Hemophilia and Bleeding Disorders Foundation
Chad Fredericksen. . . . . . . . . . . . . . . . . . . . . . . . . . . Texas Central Hemophilia Association
James Setliff. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Lone Star Hemophilia Chapter
Linda Wyman-Collins. . . . . . . . . . . . . . . . . . . . . . . . Independent
Hector Ortiz . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Hemophilia Outreach of El Paso
Stephen Long. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Hemophilia Association of the Capital Area
Zack Bordone. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Virginia Hemophilia Foundation
Michael Birmingham. . . . . . . . . . . . . . . . . . . . . . . . . Bleeding Disorders Foundation of Washington
Darcy Zwier. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Wisconsin Bleeding Disorders Network
HFA Staff & Consultants*
Kimberly Haugstad | Executive Director
Susan Swindle | Development Director
Michelle Burg | Programs Director
Pat Brown | Director of Meetings/Office Manager
Rich Pezzillo | Communications Director
Matt Landseadel | Director of Technology Services
Lauren Neybert | Associate Director, Programs
Janet Chupka | Programs Manager
Sonji Wilkes | Programs Manager
Katie Verb | Advocacy & Government Relations Manager
Janel Johnson-Momanyi | Advocacy & Programs Manager
Wendy Owens | CHOICE Project Manager
Elaine Chan | Programs Coordinator
Athenna Harrison | Project Coordinator
Stephen Fitzmaurice | Communications & Advocacy Coordinator
Samantha Costa | Development Coordinator
Deema Tarazi | Advocacy Intern
Meredith Clark | Project Coordinator
Michael DeGrandpre | Graphic Designer*
Kristin Mitchell | Graphic Designer*
Christie VanHorne | Program Consultant*
Chuck Zellermayer | Accountant*
*Independent consultants
21
SPEAKERS
Annette von Drygalski, MD, PharmD
Bridget Tyrey
Annette von Drygalski, MD, PharmD, is is the Assistant Clinical Professor of Medicine in the Division of Hematology/
Oncology, and Director of the Hemophilia and Thrombosis
Treatment Center, Department of Medicine, at the University
of California, San Diego. She is also a Adjunct Assistant Professor, Department of Molecular and Experimental Medicine
at The Scripps Research Institute, La Jolla, California. Dr. von
Drygalski earned her PharmD from Ludwig Maximilians University, and her medical degree from Friedrich Alexander University Erlangen/Nürnberg and Ludwig Maximilians University in Munich, Germany. She completed residency in Internal
Medicine at the Medical College of Wisconsin, Milwaukee, and
fellowship in Hematology and Oncology at the University of
California, San Diego and The Scripps Research Institute. Dr.
von Drygalski is board certified in hematology, oncology, and
internal medicine. She is a member of the American Society of
Hematology and the World Federation of Hemophilia. Dr. von
Drygalski is dedicated to the care of patients with hemophilia
and other bleeding disorders. In this role, Dr. von Drygalski developed basic, translational and clinical research interests addressing the evolving needs of aging patients with hemophilia,
such as cardiovascular and joint disease. Dr. von Drygalski is
the institutional principal investigator of several international clinical trials exploring long-acting or novel clotting factor
products, as well as studying hypertension, and joint disease in
patients with hemophilia at the bench and in clinic.
Bridget Tyrey has a son, Austin, with severe hemophilia A. Bridget was first connected to the hemophilia community when she
lost her father in 1986. After the birth of her son, she served on
the Gateway Hemophilia Association board for over 16 years.
She taught her son the power of self-advocacy when he was
only 2. Bridget and her sister started Camp Notaclotamongus
in 2008 for children with a bleeding disorder. She now serves
as the Executive Director of Gateway Hemophilia Association.
Carl Weixler
Carl Weixler started his involvement with the bleeding disorder community at the age of 4 when he met with the Governor
of Kentucky to discuss a “hemophilia program” for the state.
He is a Past President of HFA and the Kentucky Hemophilia
Foundation. He served as Chair of the KY Hemophilia Advisory Committee and on numerous advisory boards for governmental agencies and manufacturers. He has been a public
speaking advocate here and abroad. He is currently a member
of the board of directors for the Committee Of Ten Thousand.
Carl is very passionate about his: community, family, and God.
If you’ve ever met him, you know he says…“I woke up this morning and was NOT in hell or the hospital, it’s a good day!”
Carol Reed
Bill Berger, MS, MSW is a social worker/program coordinator
at the Washington University Center for Treatment of Bleeding
and Blood Clotting Disorder in St. Louis, MO. He is a former
Gateway Hemophilia Association (St. Louis) Board member and
has been actively involved in education, research, and advocacy
with the bleeding disorders community for over 20 years.
Carol Reed was raised in Texas and now enjoys the relaxed
country life living outside Oklahoma. She was the Executive
Assistant for Southwestern Medical Center in Lawton for 22
years, but left to help her husband, John, in their efforts to
provide care to those with hemophilia. Carol and John, who
has severe hemophilia (factor VIII), have been married for six
years. Together, they currently have six children and sixteen
grandchildren. When not working or spending time with family, Carol is very involved with her church and enjoys spending
time with John bowling, fishing, and traveling.
Bill Conde Goldman
Cazandra Campos-MacDonald
Billy Conde Goldman (a bleeder) is an artist living and working in Minnesota. His most recent project, a collaboration with
fellow artist Bob Lordan (not a bleeder), is entitled prayer for
civilization which consists of 64 paintings corresponding to
the hexagrams of the i ching. He celebrates DIY approaches
to living life and believes creativity is available to all notwithstanding experience, skill, or talent.
Cazandra received a Bachelor of Music Education Degree from
Houston Baptist University and taught band in the Texas Public School System for 13 years. In 1996, she gave birth to her
first son, who was diagnosed with severe hemophilia A. Cazandra continued to teach and devoted her extra time to educating
herself and others with bleeding disorders. In 2001 she was approached by her home care company to develop a newsletter
Bill Berger, MS, MSW
22
to educate patients about bleeding disorders. In 2003 she was
hired full time as Marketing Manager for the company, which
eventually became part of the Walgreens family. In 2006 she
gave birth to a second son, also diagnosed with severe hemophilia A with an inhibitor. After the birth of her second son,
Cazandra learned the truth about the brother she never knew:
Ronaldo Julian Campos was born and lived for only five days.
He died from complications from a head bleed. Cazandra has
worked as an advocate in the bleeding disorder community for
18 years. She is an avid blogger and writes two blogs; one is
“2BrothersWithHemophilia”. You can find Cazandra and her
blogs at www.cazandramacdonald.com, on Twitter @2broswithhemo, and on Facebook. She is also one of HFA’s bloggers
for “Infusing Love: A Mom’s View.”
Chris Walsh, MD
Dr. Chris Walsh is Associate Professor, Medicine/Hematology
and Medical Oncology and Associate Professor, Gene and Cell
Medicine at St. Sinai University in New York City. He is Director
of the Mt. Sinai Hemophilia Center. Dr. Walsh received a Bachelor’s degree in biochemistry from Rutgers College in 1975. He
was awarded a Ph.D. degree in Biochemistry from Bowman Gray
School of Medicine in 1981 and an M.D. from Tulane University
in 1986. His laboratory research revolves around the development and application of cellular and genetic therapies for hematological-based disorders, both inherited and acquired. The
adeno-associated virus (AAV), a principal vector system he developed and continues to improve for bleeding disorders such
as hemophilia A, B and Von Willebrand disease (vWD), is a major research interest. As Director of the Mount Sinai Hemophilia
Treatment Center, he is actively involved in studies addressing
hemophilia patients with inhibitors, long-acting factors, and
new drugs. In tandem with research interests, he has published
on the use and adherence of factor prophylaxis in hemophilia
patients. The goal of his gene transfer work is to produce sustained and therapeutic factor levels in hemophilia patients.
Corey Pierce
Corey Pierce has long been involved with the hemophilia community. He has been a counselor at the Hemophilia Foundation
of Oregon (HFO) camp since 2002 and served as an administrative assistant in 2010. He is a severe hemophiliac and recently
completed a master’s degree in epidemiology in the Netherlands. While interning with Bayer Health Care/Pharmaceuticals,
he proposed the “Living Fit: A Joint Effort Program.” to advocate
for greater physical fitness for children with bleeding disorders.
Corey is also a registered yoga instructor. He has taught yoga
classes both at camp and to parents of children with bleeding
disorders. Corey shares, “I came to yoga in an attempt to build
back muscle that had atrophied following an ankle fusion/surgery. I became dedicated to the practice as all of the subtle benefits, both psychologically and physically, became apparent.”
Dave Robinson, PhD
Dave Robinson is a licensed and practicing marriage and family therapist and director of the marriage and family therapy
program at Utah State University. He and his wife, Jamie, have
5 children (three sons and two daughters). The oldest and
youngest sons both have moderate Factor IX hemophilia. Dave
travels the country sharing his experience and expertise with
families on behalf of HFA’s Families program.
Dawn Evans
Dawn Evans is the mother of 22-year-old Dylan, a senior at the
University of Toledo, who is affected with severe factor VIII
hemophilia. Dawn’s father was also affected with severe factor
VIII hemophilia with an inhibitor and she is a symptomatic carrier. Dawn works for the Hemophilia Foundation of Michigan.
Debbie Porter
Debbie Porter has been involved in the bleeding disorder community for most of her life. Her father was born with severe
hemophilia A in 1934 and passed away from complication of
HIV/AIDS in 1986. Her son has severe hemophilia A with a
high titer inhibitor and her two daughters also have bleeding
disorders. After many years of dealing with an inhibitor, Debbie
and her son recognized a need for greater awareness and education about inhibitors to hemophilia treatments. She founded
RID (Reduce Inhibitor Development) in 2013 as a grass-roots
patient advocacy group. RID provides educational materials,
monitors product safety and licensing developments, and collaborates with others to promote awareness. RID aims to encourage the research and development of methods to prevent
and eradicate inhibitors so that all people with bleeding disorders can experience safe and effective treatment. Debbie has a
degree in Business Administration and has completed several
years of clinical training towards a registered nursing degree.
She ran her own company as a Certified Public Accountant
providing accounting and management services to non-profit
organizations; she currently works as a consultant in rare disease management.
Diane Lima
Diane Lima is a member of the HFA board and is also serves on
the board of the New England Hemophilia Association , where
she is on both the Governance and Advocacy Committees. She
has three sons, one of whom has severe hemophilia A and von
Willebrands type 2n. Diane and her family reside in Massachusetts.
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Donald Akers, Jr.
HFA Counsel
Donald (Donnie) Akers, Jr. is an attorney from Louisiana whose
relationship with HFA began as a volunteer legal advisor when
HFA was headquartered in Lafayette, Louisiana. From 2000 to
2008, Donnie served as a member of the HFA Board of Directors, Executive Committee, and 2nd Vice President. Donnie is a
former HFA board member, and Symposium Co-Chair, he continues to serve as HFA’s General Counsel today. He has represented HFA on Capitol Hill and also at NIH, CDC, DHHS,
PPTA, BPAC and at other meetings relevant to the hemophilia
community. He holds a Bachelor’s Degree in Political Science
from the University of Louisiana-Lafayette, a Juris Doctorate
from the LSU Law School, and he studied Rehabilitation Counseling at the Graduate School of University of Louisiana-Lafayette. Donnie has taught “Law and Banking” for the American
Bankers Institute and at South Louisiana Community College. He practices business and estate law with the Gibbens
& Stevens law firm in New Iberia, Louisiana and he serves as
an Assistant District Attorney for the 16th Judicial District of
Louisiana where he works with the Elderly Protective Services
Division and the Family Services Division of the DA’s office.
Greg McClure, MA, MS, LSW
Greg, an ordained minister, has been a member of the hemophilia community for over 35 years. He and his wife Diane (D.
2011) have two adult sons—Marcus (D. 2007) and Gregg with
severe hemophilia A. For the past twenty years, he has worked
as a railroad conductor and a HTC social worker. Although retired, he still serves as a volunteer for the HFA Medical Advisory Board, the NHF Cultural Diversity Working Group, the
Sharing Is Caring Outreach Ministry, and the Marcus McClure
Big Dreams Foundation.
Gwenn Barringer and Shawn Decker
Douglas Hartsough
As an undergraduate at Wittenberg University, a young woman with HIV spoke at Gwenn’s sorority house. Inspired, Gwenn
took a class on HIV/AIDS. While attending James Madison
University’s graduate program, she volunteered for an AIDS
Service Organization and that’s how she met Shawn, who had
recently opened up about his experiences living with HIV. Infected as a child through contaminated blood products used to
treat his hemophilia, Shawn Decker faced discrimination early
in life. In the 6th grade, he was expelled from school after testing positive. He navigated the dating world in high school with
a secret he guarded tightly. At age 20, he had a change of heart
and went public by creating one of the first HIV-specific blogs .
Doug Hartsough was born and raised in Pittsburgh, PA. He
was introduced to the hemophilia community when the 4-yearold son of his adopted daughter fell and experienced a cranial
bleed. After more than a week of doctor visits, they discovered
his hemophilia and Doug rushed him to Children’s Hospital
Oakland, CA. In the 16 years since that discovery, Doug has
served a 2 year term as President of the Hemophilia Foundation of Northern California and 6 years on the HFA Board of
Directors.
Since 2000, Shawn and Gwenn have been educating together, using their relationship as a way to show that laughter and
honesty are what makes a relationship healthy, regardless of
the presence of medical conditions. They’ve successfully engaged tens-of-thousands of people, and have shared their story with millions through Cosmopolitan Magazine, MTV, BBC
and HBO films. Shawn’s memoir, My Pet Virus, was published
by the Penguin Group in 2006, and he just finished writing a
screenplay based on the book.
Elaine Chan,
MSW, MPH, HFA Programs Coordinator
James Luck, Jr., MD
Elaine Chan is a Program Coordinator at HFA for the Helping
Hands and Dads In Action programs. Prior to joining HFA in
Spring 2014, Elaine worked extensively in the mental and behavioral health field, providing therapeutic services to underserved children and families, coordinating social services and
programming to cancer patients, and program development
and evaluation for women experiencing homelessness. Elaine
received her MPH at Boston University in Boston, MA, MSW at
Temple University in Philadelphia, PA, and BS in Psychology
at University of Pittsburgh. Elaine currently resides and works
in Washington, DC.
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James V. Luck, Jr.’s involvement with Los Angeles Orthopaedic Hospital began in 1959 as a high school volunteer. He attended Wesleyan University and then the University of Southern California for his M.D. degree and completed his residency
in Orthopaedic Surgery at Los Angeles Orthopaedic Hospital.
His fellowships were in the areas of adult reconstruction and
musculoskeletal tumors. From 1989 to 2011, Dr. Luck was President, Chief Executive Officer, and Medical Director of Los Angeles Orthopaedic Hospital. He served as residency Program
Director of the combined UCLA/Orthopaedic Hospital Department of Orthopaedic Surgery at the David Geffen School
of Medicine at UCLA from 2005 to 2014, where he is currently
Professor in Residence. From 2000 to 2011 he served as a Direc-
tor of the American Board of Orthopaedic Surgery. He served
eight years including two as Chairman of the Residency Review Committee and also served on the Boards of Directors of
the American Academy of Orthopaedic Surgeons, the American Orthopaedic Association, and the California Orthopaedic
Association. He currently is Chairman of the National Medical
Advisory Board of Shriners Hospitals for Children. Dr. Luck
received Orthopaedic Teacher of the Year Award and Special
Resident’s Award for Excellence in Teaching and Twinned
Centers of the Year presented by the World Federation of Hemophilia, He was granted Humanitarian of the Year awards by
California Hospital and the Crippled Children’s Guild. In 2013,
Dr. Luck received the Lifetime Achievement Award from the
World Federation of Hemophilia. Dr. Luck and his wife Mary
have one son, three daughters, and five grandchildren.
Janet Chupka, RN, BSN
James Romano
Jim Drew and his team are experienced access strategy and
patient advocacy professionals, and they currently oversee
cross portfolio patient support programs offered by Gilead Sciences, Inc. Team responsibilities span call center operations
and case management services including: insurance coverage investigation, triage assistance to financial support offerings, and free product programs designed for the uninsured
and underinsured. Prior to his responsibilities at Gilead, Jim
led Genentech’s Access Solutions reimbursement planning
and program management team, and he further developed his
broad understanding of patient support services and managed
markets while working with companies including Ascension
Health, Eli Lilly and Company, and Express Scripts, Inc. Jim
and his family are from Indiana and they are currently living in
California. While in Indiana, Jim received his Bachelor of Arts
Degree from Indiana University and a Master’s in Business Administration from Butler University.
Since 2005, James Romano has served as the Director of Government Relations and Advocacy for Patient Services, Inc. (PSI).
James worked with Dr. Dana Kuhn to develop the Government
Relations Department to promote access to treatments and
therapies for patients with chronic and catastrophic illnesses
through public and private health insurance coverage. James
has spent his life advocating in the hemophilia Community. He
has three uncles and two cousins with hemophilia. James is the
fourth generation to advocate with the hemophilia community.
In 1995, James began his career in advocacy lobbying for the
Ricky Ray Hemophilia Relief Fund Act when he was 19 years
old. After college, James worked on Capitol Hill for a Member
of Congress for 5 years and at a health care lobbying firm—
where he represented the Hemophilia Federation of America
(HFA). James has his BA in Political Science from Marymount
University, an MA in Public Administration from George Mason University, and he is currently working on his MBA from
The University of Mary Washington. James currently resides
in Fredericksburg, Virginia with his wife Carolee and daughters Rachael, Erica and Ashley—who he is training to be the
fifth generation to advocate for the hemophilia community in
his family.
Janel Johnson-Momyani, MPA
HFA Advocacy Manager
Janel Johnson-Momanyi works as an Advocacy and Programs
Manager at HFA. Janel has been involved with HFA and the
bleeding disorders community since 2008. She received her
MPA degree at Baruch School of Public Affairs in NY and B.S.
in Psychology at Coppin State University in Maryland. Janel
enjoys empowering and learning from members of the community.
Janet is a graduate of the University of Wisconsin-Milwaukee
with a Bachelor of Science degree in Nursing. Upon completion of her nursing degree, she worked for UWM in community
health and as a mentor for undergraduate nursing students.
She has worked in a variety of health care fields including:
geriatrics, administration, management, urgent care, and most
recently wellness. Janet began with Hemophilia Federation of
America in October of 2011 to contribute to and help promote
the FitFactor program; a special online fitness and nutrition
project. She currently manages both FitFactor and Blood Sisterhood Programs at HFA. She resides in Wisconsin, with her
husband, John, and their three children.
Jim Drew
John Bruno
John Bruno is a father of two. He has a three-year-old son, Alexander, who has severe hemophilia A with an inhibitor, and a
7-month-old daughter, Annabelle. He has worked at Raytheon
for seven years and is currently in the Environmental Test Department. John. He is also very involved in the union where he
is a steward for I.B.E.W. Local 1505. John is the co-owner of a
martial art school and teaches Taekwondo and Krav Maga. He
has been involved in martial arts his entire life and has been
teaching for 18 years. He recently started a company with a
friend called Old Iron Beard Co. making beard care products.
John is also very involved in charity. He is in his 6th year serving on the board of directors at the Methuen Knights of Columbus. He joined the New England Hemophilia Association
Board about a year ago. He is on the board for a new start up
non-profit called A Bump in the Road. He also is a co-founder and leader of Beards for Bleeders. John and his wife, Diane,
25
started a group called Missing Factor in 2012 doing fundraisers
and donating all money to HFA and NEHA. They have organized numerous events for hemophilia including March Madness brackets, Hemo Hunt (scavenger hunt on party buses),
card tournaments, polish horseshoe tournaments, Brew Fest,
road races, etc. If you would like to know more about any of
these events please feel free to contact him and he would be
happy to talk to you.
John Reed, DrPH
John is a Factor VIII (severe) hemophiliac born in Oklahoma
in 1959. He received his B.S. in Pharmacy from the University of
Oklahoma in 1984 and was later awarded a Doctor of Pharmacy degree from the Oklahoma State Board of Pharmacy. From
1984 to 1994, he worked in retail business in S.E. Texas, and
as owner of his own business, J & S Drugs, for seven years. In
1995, after returning to Oklahoma, he started Cyril Home Care
Pharmacy, an infusion service that specializes in clotting disorder products. John also does part-time work in retail pharmacy
and has a national certification in Immunizations and Vaccines. John has held positions of varied responsibility in the
hemophilia community: as a liaison for the CCG and the ACTG
(Aids Clinical Trial Group), president of the Oklahoma Hemophilia Foundation, Principal in People with Bleeding Disorders
and HCV, chairman of various committees, and an active participant in the Blood Brotherhood of at the HFA. Currently, he
serves as the Co-Chair of the Blood Brotherhood Committee
and has enjoyed working with the staff and committee. John
was married in 1978 to Sherrel; they had two children. After
Sherrel’s passing in 2008, he married Carol Jean, a longtime
friend of theirs. They enjoy running the business, as well as
their extended family of 6 children and 16 grandchildren, and
many volunteer activities.
Justin Levesque
Justin specializes in the critical analysis of images and their
impact on social norms and community expectations. He
lives in Portland, Maine where he runs his own design studio,
Shop Geometry. He also serves as Creative Director for The
Hemophilia Alliance of Maine and is Co-Director of the FOLX
program which celebrates and acknowledges creativity in the
bleeding disorders community.
Katie Verb, JD
HFA Advocacy Manager
Prior to joining HFA, Katie was a member of the government
affairs team at the Toy Industry Association. Before turning
her interest to policy and advocacy work and moving to Washington, D.C., Katie worked in Chicago for a nonprofit that educated and prepared women to run for office. She also helped
found a nonprofit that provided educational and mentoring
26
opportunities for women in the business world. Katie earned
her law degree from Michigan State University in 2008, and
has a B.A. in Political Science from Loyola University Chicago. Having a family history of hemophilia, Katie is excited to
be working with HFA as an advocate for the bleeding disorder
community.
Kimberly Haugstad, MBA
HFA Executive Director
Kimberly is the Executive Director for Hemophilia Federation
of America and brings a commitment to collaboration and results in building individual strengths and community based
advocacy. Since joining HFA, she has been strategically focused on developing the organization to meet today’s bleeding disorders community needs. In 2008, Kimberly relocated
HFA’s main office back to Washington DC and increased public policy and advocacy efforts, coinciding with the Affordable
Care Act’s development and passage into law. During her time
at HFA, Kimberly has grown and developed staff and volunteer
teams who have improved and increased visibility of HFA programs and services as well as created measurable and positive
outcomes for people with bleeding disorders. Prior to joining
the HFA, Kimberly spent more than 15 years in a variety of
corporate management and consulting roles building and developing people and organizations. Her volunteer leadership
history includes service on several boards and advocacy committees both locally and nationally in and outside of the bleeding disorders community. Kimberly holds an MBA and has two
young children, one with severe hemophilia.
Laura Gray
Laura Gray is the Projects Director of the Boston Hemophilia Center (BHC). She was the BHC social worker for over 10
years in both the adult and pediatric center. She is the primary author of two books based on oral histories. The first, “The
Gift of Experience,” by Laura Gray and Christine Chamberlain,
was written to capture the experiences of men with hemophilia
who were born before 1965, as well as caregivers who treated
hemophilia during the 1970s and 1980s. The book is a resource
for the bleeding disorders community who want to have an understanding of the history of the disease and how it affected
lives. The second, “The Gift of Experience II,” by Laura Gray,
Ziva Mann and Allie Boutin, was written for families with newly diagnosed or young children with hemophilia. This book
explores what it’s been like for parents from the BHC to raise
their children from birth to age 6 and provides encouragement,
hope, and practical tips to families embarking on their own hemophilia journey. Laura is working on a third book in this series, “The Gift of Experience III,” that explores what it is like
for young adult men living with hemophilia today. The Gift of
Experience I and II are both available on Amazon.
Lauren Neybert, MSW
HFA Associate Director of Programs
Lauren Neybert works as the Associate Director of Programs at
HFA, specifically working with the Helping Hand, Blood Brotherhood, and Young Adults Programs. Lauren has been involved
with HFA and the bleeding disorders community since 2010,
delivering educational and social support programming. Prior
to working in the bleeding disorders community, she has advocated and provided educational programming to persons experiencing homelessness, survivors of domestic violence, and
older adults. Lauren is a social worker and received her MSW
at The Catholic University of America in Washington, DC and
BSW at the University of Iowa in Iowa City, IA. Lauren lives
and works from in Illinois.
Linda (Lew) Wyman-Collins,
BSN, RNC-NIC, BSN, RNC
Lew is a career nurse currently employed at the Medical Center of Lewisville in Lewisville, Texas. She has also worked at
George Washington University Hospital in Washington, DC,
Greater Southeast Hospital (DC) and the University of Maryland Hospital in Baltimore. Lew has vast experience as a float
pool nurse and then more advanced training as a neonatal intensive care nurse. She been a charge nurse for 30 years and has
educational and management experience. Lew has extensive
personal and professional experience in the care and management of hemophilia and other blood-clotting disorder patients.
She volunteers on local and national boards of organizations
involved in the education and advocacy of those affected by
bleeding and clotting disorders. She has been a champion of
health care issues on the state and national level for the past
twelve years. Lew is a guest speaker at local and national meetings and has volunteered as a nurse and educator at various
summer camps for children and adults in Connecticut, North
Carolina, Virginia, Maryland, and Texas. She is on the Working
Group for Females with Bleeding Disorders of the Centers for
Disease Control and Prevention.
Luisa Stamm, MD
Dr. Luisa Stamm is the Associate Director of Clinical Research
at Gilead Sciences. Dr. Stamm came to Gilead Sciences two
years ago from Massachusetts General Hospital where she
was an infectious disease physician. While at Gilead, she has
worked as study director and medical monitor on clinical trials with Sovaldi and Harvoni focusing on special populations
including patients with renal insufficiency, HIV/HCV co-infection, and also the current ongoing trial for patients with bleeding disorders.
Mark Antell
Mark Antell has mild-moderate hemophilia A, and, until recently, hepatitis C. Effective, low side-effect drugs became available
at just about the same time that Mark experienced severe HCV
symptoms. After 12 weeks of therapy, he is now cured of HCV.
Mark currently serves as the Co-Vice President of the HFA
Board of Directors. He is active in his local hemophilia chapter (Hemophilia Association of the Capital Area); but spends
deep winter and summer with his partner in the central valley
of Costa Rica. Mark saw far too many of us sinking from HCV,
or experiencing severe side effects from HCV therapy that frequently did not work. He, along with Paul Brayshaw, HFA’s Past
President, established an informal group, “People with Bleeding Disorders and HCV.” That group lobbied FDA, pharmaceutical developers, patient advocates, and others to incorporate
urgency in activity related to development and access to more
effective therapies for HCV.
Meg Bradbury, MS, CGC, MSHS
Meg Bradbury is a Senior Genetic Counselor at GeneDx, a
genetic diagnostic testing company. Meg also serves on the
National Hemophilia Program Coordinating Center Genetics
Work Group, and is also a Board Member of the Hemophilia
Association of the Capital Area. Meg joined GeneDx as a Senior
Genetic Counselor in the spring of 2013. She received her Medical Genetics degree from the University of Wisconsin-Madison
in 2005. Prior to joining GeneDx, she worked as a genetic counselor at Children’s National Medical Center, in Washington DC
where she was part of a neuromuscular multidisciplinary clinic,
and also coordinated and developed multiple research studies.
She went on to get her Masters in Clinical and Translational
Research at the George Washington University in 2013 with an
interest in health communication and genetic testing for bleeding disorders, using a mixed method approach. She is a member
of the National Society of Genetic Counselors and the Personalized Genomic Medicine Special Interest Group.
Michael Pezzillo
Michael Pezzillo is a Chief Instructor for Mastery Martial
Arts in Rhode Island. He has trained in the martial arts for 19
years. Although he does not have hemophilia, it has affected
him personally as his two brothers were born with it. Michael
shares, “Growing up with Richard and Anthony and watching
the challenges, pain, and limitations they endured, motivated
me to find a way to make people with hemophilia have some
kind of normalcy in their lives.” Michael finds the martial arts
to be both rewarding and challenging. He is thrilled to bring
the martial arts to the bleeding disorders community because
he believes it builds confidence in students of all ages, races,
and with different physical abilities or limitations.
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Michelle Morath
Paul Brayshaw, MPH
Michelle Morath is the owner of JourneyFit, LLC, www.journey-fit.com, in Albuquerque, New Mexico. She is currently enrolled in the Doctor of Naprapathy program at the Southwest
University of Naprapathic Medicine. She was awarded a Bachelors of University Studies degree with emphasis in Exercise
Science and Business, summa cum laude at the University of
New Mexico during May 2010. Michelle has been a nationally Certified Personal Trainer since 2003 through National
Strength & Conditioning Association and since 2004 through
National Academy of Sports Medicine. She is certified as a
Corrective Exercise Specialist through National Academy of
Sports Medicine, certified in Heart Zones Levels 1 & 2, and CPR
and AED certified. Her additional credentials include Dr. Sears
Certified Health Coach and Reiki Level I Practitioner. Michelle
has experience working with clients dealing with past injuries,
mature adult clients, and clients in physical pain. She takes a
gentle approach which includes helping people manage their
pain through movement and proper nutrition. Michelle strongly believes that, through appropriate exercise and nutrition,
anyone can improve their quality of life and rejuvenate.
Originally from Colorado, Paul relocated to Washington D.C.
over 15 years ago as a grassroots advocate and to seek legislative support for issues important to the hemophilia community, particularly the Ricky Ray Hemophilia Relief Fund Act.
Following two years as a staffer for a U.S. Congressman, he
worked in the Ricky Ray Program Office in the U.S. Department of Health and Human Services assisting with compassionate payments for three years and where he was awarded
the Secretary’s Award for Distinguished Service. Paul has continued to work in the health sector, and has been employed by
Factor Support Network Pharmacy since 2003.
Mike Soucie, PhD
Dr. Soucie is an epidemiologist and has been working at the
Centers for Disease Control and Prevention for 20 years. The
focus of his work has been the development of surveillance
systems for people with bleeding disorders. Analyses of data
from these systems are used to assist in the development and
evaluation of public health interventions to prevent or reduce
the complications associated with these disorders.
Patrick James Lynch
Patrick James Lynch is an actor/producer/writer living with severe hemophilia A. He is the co-founder of the digital content
agency Believe Digi, through which he created the hemophilia
comedy web series, “Stop The Bleeding!” (Recipient: National
Hemophilia Foundation’s 2014 Loras Goedken Award; Recipient: Hemophilia Federation of America’s 2013 Terry Lamb
Award). Through Believe Digi, he’s also written and produced
“Helping Hany” - the stop-motion, animation series about a
girl with VWD, produced & hosted “Breaking Barriers” - a teen
goal-setting workshop, and continues to produce and host the
inspirational speaker series titled “Powering Through.” He is
the board president of the new 501(c)(3) Entertainment 2 Affect Change, through which he will make his feature film directing debut this summer shooting a documentary about Paul
Newman’s Double H Ranch, an organization for children and
families affected by life-threatening illnesses. Patrick’s work in
hemophilia has been featured on outlets such as PBS, FOX, and
Buzzfeed.
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Richard Pezzillo,
HFA Communications Director
Richard Pezzillo is the Communications Director for the Hemophilia Federation of America. Prior to joining HFA, Richard
was the Deputy Press Secretary for Senator Sheldon Whitehouse of Rhode Island. Richard has hemophilia and over 15
years of leadership experience working with the bleeding disorders community. He is the former co-chair of the National
Hemophilia Foundation’s (NHF) National Youth Leadership
Institute (NYLI) and is the recipient of the NHF Ryan White
Meritorious Service Award. Richard earned his undergraduate
degree in 2008 at Western Connecticut State University and
currently resides in Rhode Island.
Robert Sidonio, Jr., MD, MSc.
Dr. Sidonio’s interest in hemostasis began during his pediatric
residency at the University of Louisville under the mentorship
of Dr. Sanjay Ahuja. Subsequently under Dr. Margaret Ragni’s
research guidance during his fellowship he was accepted to
the ASH Clinical Research Training Institute (CRTI) in 2009.
Following fellowship at the University of Pittsburgh, he took a
position as Director of Pediatric Hemostasis and Thrombosis
Program at Vanderbilt University. Under Dr. Michael DeBaun’s
mentorship, he was able to obtain to obtain a KL2 to investigate the bleeding tendency in hemophilia A carriers. In August
2014, Dr. Sidonio accepted the position of Associate Director of
Hemostasis and Thrombosis at Emory University/Children’s
Healthcare of Atlanta. Dr. Sidonio is continuing his clinical research investigating the bleeding phenotype and genotype of
hemophilia A carriers funded by the Hemophilia of Georgia
Clinical Scientist Development Grant and HTRS Mentored Research Award.
Ryan Gielen
Ryan Gielen is an independent filmmaker and producer. Producing credits include “The Graduates,” in the top ten comedies all time on Hulu (2010 feature film), “Turtle Hill, Brook-
lyn” (2013 feature film, Audience Award for best Best Narrative,
NewFest), “Stop the Bleeding!” (web series), and “Helping
Hany” (web series). Ryan’s films have won awards for writing
and direction in festivals around the world, and he’s a two-time
WEBBY winner for his interactive web series “Deleted: The
Game.” Ryan is a contributor to NoFilmSchool.com, Sundance
Film Festival Artist Service’s Blog, and Tribeca Film Fest Blog.
Ryan and his brother Matthew are the co-founders of DVD’s to
the Troops, an organization dedicated to collecting and distributing used and new DVD’s to American military in war zones
around the world.
Sharon Ingram, MS, HS-BCP, CWHC
Sharon Ingram is a Board Certified, Licensed Human Services
Practitioner as well as a Certified Wellness & Health Coach.
Sharon earned a Bachelor’s of Science degree in Human Services, specializing in Mental Health Counseling, and a Master
of Arts degree in Human Services Counseling, specializing
in Health and Wellness. While attending Liberty University,
Sharon’s heart was profoundly touched as she gained a global
worldview, which defines population health as going beyond
public health and considers the distribution, determinants, interventions, and policies that impact health outcomes across
a broad population. Called to advocacy and outreach in the
hemophilia community, Sharon along with her husband, Warren, who has severe hemophilia, has served this community for
over 16 years. Sharon’s love for the bleeding disorder community and individuals diagnosed with a chronic illness is evident
by her ongoing volunteerism, recognition by Hemophilia of
North Carolina as Volunteer of the Year for 2014, and a wellness coaching service catering to and supporting personalized
issues. For the past five years, Sharon has faithfully facilitated
spouses and partner groups at national Symposiums. Sharon
and her family live in North Carolina.
Sharon L. Meeks, MD
Dr. Shannon Meeks is an Assistant Professor of Pediatrics at
Emory University and Children’s Healthcare of Atlanta. She attended Duke University where she graduated with a Bachelor of
Science in mathematics and was a member of Phi Beta Kappa
before continuing on to medical school at the University of Mississippi. During her training she developed a strong interest in
hemophilia and now has a basic, translational, and clinical focus on the immune response to factor VIII in hemophilia A.
Sonji Wilkes, HFA Programs Manager
Sonji Wilkes was born and raised in North Carolina, where
during high school, she developed an appreciation for volunteerism and community service. She graduated Magna Cum
Laude with a BA in Behavioral Science from the Metropolitan
State College of Denver in 2001. Sonji has volunteered exten
sively in the bleeding disorders community and was selected
as the 2006 National Hemophilia Foundation’s Volunteer of
the Year. She is currently working with HFA as a program manager for HFA’s Families Programs and writes for HFA’s weekly
Mom’s Blog, “Infusing Love.” Sonji, her husband Nathan, and
three children: Nora, Thomas, and Natalie, reside in Colorado.
Stanford Murray
Stanford Murray is a proud husband to Nikita, and a father of
three children: sons Jecorei and Evan, 18, who both have severe
hemophilia A and daughter Kahliya, who is a carrier. Stanford
is originally from Chicago, but now resides in Tennessee. He
has served on several boards and committees, both nationally
and locally. These include the National Hemophilia Foundation, Tennessee Hemophilia and Bleeding Disorder Foundation, and HFA’s Board of Directors. For the past few years, Stanford has been one of the driving forces behind improving and
expanding HFA’s Dads in Action program. Stanford’s personal
mission is to provide support and assistance to individuals and
families with bleeding disorders. He has a special interest in
building a network of information and support for dads.
Stephen Fitzmaurice, MPS
HFA Communications & Advocacy Coordinator
Before becoming HFA’s Communications and Policy Coordinator, HFA, Stephen managed the telecommunications portfolio for the People for the American Way Foundation’s Young
Elected Officials Network. Stephen has also handled communications for senior Florida Senator, Bill Nelson, both in his
Senate office and on his reelection campaign. A Florida native,
Stephen holds a bachelor’s degree from the University of Florida, and a master’s degree in legislative affairs from the George
Washington University.
Steven Walker, MS
Mr. Steven Walker is Co-Founder of the Abigail Alliance for
Better Access to Developmental Drugs. His responsibilities
include regulatory and legislative efforts, scientific direction,
advocacy for patient’s’ rights, spokesperson for the alliance on
regulatory and scientific issues, and author of papers, articles
and editorials written to educate the public regarding the Alliance’s positions and initiatives. Mr. Walker became an advocate for patients suffering from serious and life threatening diseases as a consequence of his wife’s (Jennifer I. McNeillie, B.S.,
Biology; M.S. Marine Science/Geology; P.G.) diagnosis with
advanced cancer in December 2000. He recognized the need
for scientific and regulatory change in September 2001 after
learning first-hand of the serious problems with FDA’s drug
development, approval, and access policies. Mr. Walker joined
with Abigail Alliance Founder and President, Frank Burroughs
in December 2001 and initiated the Alliance’s efforts focused
29
on FDA reform and patient’s’ rights. Mr. Walker conceived and
authored the Tier 1 Initial Approval proposal that formed the
basis for the Abigail Alliance’s Citizen’s Petition submitted to
FDA in June 2003, and for the Access Act introduced in three
sessions of Congress. He provided scientific, regulatory, and
factual support for the Abigail Alliance’s lawsuit against the
FDA (Abigail Alliance v. von Eschenbach) and has authored
articles on the subjects of patient access to investigational
therapies, the rights of seriously- and terminally-ill patients to
access medical progress, modernization of drug development
and approval science, and FDA reform. He has provided testimony to the Institute of Medicine and the House Committee
on Energy and Commerce. Mr. Walker is a volunteer advocate
and receives no compensation for his work in patient and regulatory advocacy.
Sue Geraghty, RN
Ms. Sue Geraghty has an Associate of Arts degree in nursing
from Lander College in 1977, a Bachelor of Science degree in
Nursing in 1980 from University of North Carolina at Charlotte
in 1980 and a Master’s in Business (MBA) from University of
Colorado Denver in 1990. She worked as Nurse Coordinator at
the University of Colorado Denver Hemophilia and Thrombosis Center for 25 years where she retired in 2013. Currently she
is working as an independent consultant in the areas of hemophilia and health care education. Prior to that Ms. Geraghty
worked in orthopedics where she was initially introduced to
patients with hemophilia. She is certified as an Orthopedic
Nurse Clinician through the National Association of Orthopedic Nurses where she is still an active member. During her
time as nurse coordinator at the Hemophilia Treatment Center
she has sat on a number of national committees including the
nursing working group for the National Hemophilia Foundation. She has spoken locally, nationally, and internationally and
has been published in many peer-reviewed journals. Her areas
of interest within the hemophilia community include the adult
patient with bleeding disorders, patients with inhibitors, and
orthopedic issues.
Tim Andrews
Tim Andrews creates paintings that explore issues of identity
and self-representation as self-expression. His work chronicles
the personal and societal ramifications of having lived for 54
years as a person with hemophilia and having lived thirty plus
years with HIV and HCV. His self-portraits are a record of how
he journeys through this reality and speaks to an unwavering
will to survive. He lives in Tennessee.
30
Wendy Owens
HFA Principal Investigator and Project Manager
Prior to joining HFA as the Principal Investigator/Project Manager for the CHOICE Project, Wendy was the Executive Coordinator for New England Coalition for Affordable Prescription
Drugs (NECAPD). Her initial experience with the hemophilia community was as the Advocacy Coordinator for the New
England Hemophilia Association. Wendy began her career in
the private sector starting and running several companies, including an advance composite materials engineering firm with
technology patented around the world. For the past 11 years,
Wendy has been an advisor to US Secretary of Commerce and
US Trade Representative on Information and Communications
Technologies, Services, and Electronic Commerce as a member of an Industry Trade Advisory Committee (ITAC-8). Wendy lives in the greater Seattle area with her family.
Ziva Mann, MA
Ziva Mann, MA is the Patient Lead for Cambridge Health Alliance, where she represents 100,000 patients. In that role, she
works to guide visioning around patient partnership in health
and improvement for the transition to person-centered health
and healthcare for a diverse and underserved community of
patients. She supports the patients and family members who
serve on each of CHA’s primary care practice improvement
teams (PITs), doing the work of system redesign and quality
improvement in an atmosphere of collaborative learning. Ziva
also consults with Harvard Medical School’s Center for Primary Care, where she guides patient partner engagement in primary care improvement work for 21 primary care clinics. Ziva
previously worked in education for the bleeding disorder community, as editor and author of many articles. She is the author
of a children’s book, Just A Boy, written for children with bleeding disorders and their parents, editor of a collection of essays,
co-author of Gift of Experience 2: Conversations with Parents
about Hemophilia, and editor of HFA’s Dad’s in Action essay
collection. Ziva lives in Massachusetts with her husband, Ezra,
and her two somewhat improbable sons, Shai and Akiva.
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THANK YOU
for joining us!
u
o
y
e
e
S xt y ea r !
ne
36
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38
NOTES:
39
NOTES:
40
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Symposium agenda - Hemophilia Federation of America

Transcription

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