Our Journey Continues - The News Infusion - Hemophilia of South Carolina
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The News Infusion
The Official Newsletter of The Bleeding Disorder Association of South Carolina
VOLUME 9, ISSUE 2 SPRING 2021
Our Journey Continues
Featured Articles
Our Journey Continues… New Name, Annual Meeting and HELLO Conference, Page 3
Rare Disease Advisory Council Making Its Way Through the Senate, Page 25
2021 Bleeding Disorders Medical Symposium, Page 27
Page 2, The News Infusion Spring 2021
About BDASC & The News Infusion
A Chapter of the National Hemophilia Foundation
Inside this issue:
A Chapter Member of the Hemophilia Federation of America
About Us 2 A Registered Greenville County Charitable Organization
Member of the Greenville Chamber of Commerce
Lead Article: 3–5
A Proud Member of the South Carolina Associations
Our Journey
of Non Profit Organizations - Together SC
Continues...
BDASC MISSION: To raise awareness for and advocate on behalf of
Board’s Blog 6 persons with bleeding disorders and their families; provide education
and supportive services; and promote ongoing research to improve the
Community
quality of life for those affected.
Engagements 8 BDASC VISION: Bleeding Disorders of South Carolina is to be recognized as a leading organization
Voices of the providing valued services; as ambassadors of public outreach to enlighten and foster an understanding
Community 20 of what matters most to those affected by hemophilia and bleeding disorders; and to be our commu-
nity’s first choice in partnership to achieve their highest potential through empowerment, connection
Von Willebrand to their community and being part of the solutions that affect them the most, until a cure is achieved.
Community 21
Summer 2021 Calendar of Events
Have You Heard? 22 Please visit our website calendar page link to see the most current information on scheduled events
http://hemophiliasc.org/programs-and-events/calendar/
Advocacy 25
May 17 — July 5 Virtual Motivational Mondays
National News 27 June 3 — Pre-Con Kahoot Annual Meeting and HELLO Conference
Research & 28 June 10 — Virtual Blood Brothers Meeting
Development June 11-12, 19 — Virtual HSC Annual Meeting & HELLO Conference
June 22 — Virtual Camp Courage, HSC Chapter Days - Ice Cream Social
Resources & 30
Contact Information June 26 — Ladies Support Group, Coffee Underground, Greenville
July 16 — Blood Brothers Gathering, The Grand on Main, Columbia
Calendar of Events 31
July 17 — HSC Camp Connections, Saluda Shoals Park, Columbia
July 31-October 2 — Inspiring Shots (Golf Clinic), The Preserve at Verdae, Greenville
BDASC 2021 Staff & August 8-10 — Teen Retreat, Camp Canaan, Rock Hill
Board of Directors August 25-28 — Virtual NHF Bleeding Disorder Conference
Executive Director
Sue Martin Bleeding Disorders of About This Publication
Advocacy/Public Policy South Carolina The News Infusion’s mission is to provide
439 Congaree Road, Suite #5 communication, connections, education and
Jeremy Williams
advocacy awareness. It is published quarterly
Communications and Greenville, SC 29607
by Bleeding Disorders of South Carolina as an
Development Phone: 864-350-9941 informational service to its members, friends,
Greg Witul Fax: 864-244-8287 and affiliates of South Carolina’s bleeding
President info@hemophiliasc.org disorders community. The News Infusion
www.hemophiliasc.org does not endorse any provider, company or
Mike Walden
product, and further recommends that its
Vice President readers always consult with their physicians
Shelley Crisp and health care providers. The News Infusion is
for educational and communication purposes
Secretary
only and makes no claim to its accuracy.
Felicia Alexander
Editor-in-Chief The News Infusion is endorsed by the South
Treasurer Sue Martin Carolina Hemophilia Treatment Center and the
Patricia Tucker National Hemophilia Foundation.
Publisher We encourage your feedback and communi-
Members
Linda Hastie cations as a forum for exchange of infor-
Robert Butler mation, ideas, and opinions. We welcome
Cristal Day Contributing Writers your letters, articles, questions and pictures.
Eric Dunton Sue Martin All articles may be published or distributed
in print, electronic, online or in other forms.
Wendy Legrand Greg Witul All submissions will be verified and subject
Aaron Smith to editing. Please send to the editor-in-chief
Jeremy Williams
Joseph R. Krakowiak, MD at: sue.martin@hemophiliasc.org. Mail to:
Grace Church Printers 439 Congaree Road, Suite #5, SC 29607,
Sue Martin, Ex-Officio Board
Attention: Editor-in-Chief, The News Infusion.
Member
We look forward to hearing from you soon!
Page 3, The News Infusion Spring 2021
Lead Article
Our Journey Continues…
New Name, Annual Meeting and HELLO Conference
It’s almost here, our 2021 HELLO Conference and for her bequest to the organization.
Annual State Meeting! We are once again holding Virtual Volunteer Spotlight of the Year – Edna
our conference fully virtual over two weekends Rabb
June 11-12 and 19 and kicking it off with a pre- SC Hemophilia and Bleeding Disorders
conference event on June 3 with a Kahoot meet Coalition, Advocate of the Year – Jameelah
and greet. You’ll be able to learn about treatment Malcolm
therapies, support services, and enjoy meeting SC Hemophilia and Bleeding Disorders
our exhibitors and sponsors. Most importantly, Coalition, Ambassador of the Year – Susie Maloy
there will be a fun and entertaining “Kahoot SC Legislative Advocate of the Year – Rep.
Challenge”, complete with prizes! You really Adam Morgan
won’t want to miss it. Aaron Eugene Gossett Pillar of Strength Award
Our Friday Night Chapter Opening Event is – David Bennett
scheduled for a 5:30 pm start on June 11. We’ll be Board Member of the Year – Log on to find out!
recognizing this year’s HSC’s Scholarship Award We will also be introducing our new board
Recipients and Chapter Awards: members, Christine Evans, Ursula Sagot and
HSC – Alba Myers Lewis Memorial Scholarship James Whitmire, while acknowledging our
Elizabeth Snead – Freshman, Piedmont Technical outbound three-term board members, Michael
College - Practical Nursing, LPN Walden and Felicia Alexander.
HSC – Mark Asbury Eichelberger Memorial Following our awards will be our Keynote
Scholarship speaker, Glenn F. Pierce, MD, PhD. Sponsored by
Lucas Nash – Junior, Clemson University, the Hemophilia Federation of America, Doctor
Bachelor of Science - Graphic Communications Pierce will be talking about where we are now in
bleeding disorders treatment vs where we have
Bleeding Disorders of South Carolina Scholarships
been in our past, as well as telling us about his
Kennedy Brown – Freshman, Winthrop
own personal journey. Doctor Pierce serves on
University, Bachelor of Science - Psychology
the World Federation of Hemophilia (WFH) Vice
Logan Cobb – Freshman, North Greenville
President Medical, WFH USA Board of Directors,
University, Bachelor of Science - Cyber Security
and the National Hemophilia Foundation (NHF)
Marley Day – Junior, University of South Carolina
U.S. Medical and Scientific Advisory Council. He
- Civil Engineering
is an Entrepreneur in-residence at Third Rock
Cedric Jordan – Junior, Limestone University,
Ventures as well as a consultant for gene therapy
Bachelor of Science - Business Economics,
and hematology biotech companies. He co-
Healthcare Administration
founded Ambys Medicines in 2018, a cell and
Marques Johnson – Freshman, University of South
gene therapy liver regeneration start-up, and
Carolina, Bachelor of Science – Computer Science
serves as the Chief Medical Officer (CMO). Dr.
Appreciation and Partnership Award - Dr. Pierce retired from Biogen in 2014, where he led
Stephanie Ambrose, Dr. Leslie Gilbert, and Dr. the R&D of extended half-life FVIII and FIX Fc
Shayla Bergmann for their work on the South fusions as CMO. He spearheaded the donation
Carolina Bleeding Disorders 2021 Medical of 1 billion international units (IUs) and initiation
Symposium of the humanitarian aid collaboration with
Making a Difference Award - Alba Myers Lewis
Continued on page 4
Page 4, The News Infusion Spring 2021
Continued from page 3
WFH. Dr. Pierce also led the initiation of the My and the Clinical Coagulation Laboratory at
Life Our Future (MLOF) program to genotype Children’s Hospital Los Angeles and a Professor
>10,000 individuals in the US bleeding disorder of Pediatrics at the University of Southern
community. Previously, Dr. Pierce served on California’s Keck School of Medicine. He will
the NHF Board of Directors and was President provide a general overview of the following
of the NHF. Dr. Pierce received an MD and a questions: What causes genetic conditions? What
PhD in Immunology and did his postgraduate are the different types of gene therapies being
training in pathology and hematology research. researched? What are gene therapy trials trying
He has 30+ years of experience in biotech drug to figure out?
development in the areas of tissue regeneration The Gene Therapy session will be followed by
and hematology, including hemophilia, Virginia Chandler of Genentech and will be talking
beginning with Amgen and has been involved about The Science Behind the Clotting Cascade.
in the development of 5 approved products This session is intended for all rare bleeding
for hemophilia. He splits time between San disorders. In it she will review how blood clots,
Francisco and San Diego. Dr. Pierce was born what different cells and protein clotting factors
with severe hemophilia A and was cured in 2008. are involved in forming a stable blood clots and
Day Two, Saturday, June 12, will have five sessions will include the entire clotting cascade. The
with breaks sprinkled throughout the day. The classes of novel therapies that are being studied,
morning sessions start with a much-needed such as gene therapy, RNA interference, and
Emotional Wellness program sponsored by therapeutic monoclonal antibodies will also be
Pfizer. Hosted by Rachel Cooper-Leal, this session reviewed. This in-depth look makes it a “must
will give the audience an overview of how mental attend” program for anyone with a bleeding
health impacts the bleeding disorders community, disorder. An interactive project will be enjoyed by
what signs/symptoms to look for, and how to all and will be included in your conference box.
encourage dialogue with caregivers and health Our last session will be von Willebrand Disease:
care providers about emotional wellness. A to Z sponsored by Takeda. Join the VWD
Our second session of the day is Music Therapy community and learn all there is to know about
with Tim Ringgold, Sponsored by CSL Behring. VWD. This is also an opportunity to become more
This session will empower participants to connected to the larger VWD community. And
reach for music when feeling stressed in life or receive our special gift in your conference box,
work rather than harmful substances or digital just for the WD community!
distractions. Throughout Tim’s life, music has Our second weekend will start on Saturday,
been a powerful balm – particularly during times June 19, and will include Advocacy for all Ages,
of stress and pain. That’s why Tim loves working Teen and Tot programming, and some additional
in rehab centers in Southern California, with teens Special Programming. Beginning at 9:00 am our
and adults teaching them how to overcome Advocacy Coalition members will be presenting
depression, anxiety, trauma, and addiction with on the South Carolina Hemophilia and Bleeding
the help of music. In addition, he has spent a Disorders Advocacy Coalition. Learn about their
decade serving as a regional board member of work and how you can be involved. You’ll find out
the American Music Therapy Association, is a TED how to help us pass our Rare Disease Advisory
Talk speaker, husband, and father. Council Bill and share your personal advocacy
Gene Therapy Research: Understanding the experiences with the community. Hear from our
Science, with Dr. Guy Young and sponsored by Legislative Speaker about how to move a bill out
BioMarin will be featured just after our lunch of the Senate and what makes a favorable bill.
exhibit hall break. Dr. Young is the Director Also, learn why it is important to become skillful
of the Hemostasis and Thrombosis Center in advocating for you and your family, and how
Continued on page 5
Page 5, The News Infusion Spring 2021 Continued from page 4 South Carolina’s Advocacy Coalition is a vital video, The History of Juneteenth and having voice for our community. some conversations about the day at the end of For our teen members we will be having Improv our Advocacy session. The second special event for Teens provided in partnership with Hemophilia will be our closing painting party. Our friends at Federation of America. Improv for Teens is an Wine and Design will be interactive virtual session where teens will use assisting us as we create a improvisational comedy skills to build their self- special painting of “Signs confidence, competence, and self-advocacy skills. Along YOUR Journey” for Participants should leave feeling empowered (and the whole family. This will with sore belly muscles from laughing). Seasoned be our closing event, but to improv comedians from Second City in Chicago participate you must register will facilitate short improv games and utilize their by June 1 to receive your comedic talents to engage teens in this one-hour conference box. session. We will begin with a fun and competitive Exhibit and Sponsor recognition hours will be game of Kahoot, along with prizes for everyone. spread throughout the four-day total event, The Tot Programming will be fun and interactive providing the time and opportunity in breakout activities that will build friendships and help rooms for discussions on product therapies, children connect to the community and learn services, and community support. Prizes, raffles, about bleeding disorders. and food reimbursement gift cards will be We’ll be holding two special events on our provided during the Annual Meeting for those in final day of the conference. The first will be participation. It will be exciting to “see” everyone recognizing and celebrating the state holiday of and we hope you will plan to join us! Juneteenth. We’ll be viewing a two-minute short
Page 6, The News Infusion Spring 2021
Board’s
CONGRATULATIONS to our Academic Scholarship Awardees
Come help us celebrate at our Virtual Annual HSC – Mark Asbury Eichelberger Memorial
Meeting and HELLO Conference on Friday, Scholarship
June 11, at 6:00 pm as we congratulate one Lucas Nash – Junior, Clemson University,
of our largest Scholarship Awards Program Bachelor of Science – Graphic Communications
classes, awarding seven scholarships, including
the most funding we have ever provided in a Bleeding Disorders of South Carolina
single year, totaling $7,000. We doubled the Academic Scholarships
usual award amount ($500) this year believing Kennedy Brown – Freshman, Winthrop University,
that with the challenges of COVID-19, these Bachelor of Science – Psychology
students deserve a huge congratulations Logan Cobb – Freshman, North Greenville
for keeping on track with their educational University, Bachelor of Science - Cyber Security
goals. Please wish them the best and join us in Marley Day – Junior, University of South Carolina
celebration of their achievements! We are so – Civil Engineering
proud of all of you.
Cedric Jordan – Junior, Limestone University,
2021 Academic Scholarship Program Bachelor of Science – Business Economics,
Awardees Healthcare Administration
HSC – Alba Myers Lewis Memorial Scholarship Marques Johnson – Freshman, University of
Elizabeth Snead – Freshman, Piedmont Technical South Carolina, Bachelor of Science – Computer
College – Practical Nursing, LPN Science
Welcome our NEW Board of Directors!
Please join us in welcoming our new Board excited to have Christine Evans, Ursula Sagot,
of Directors who will be introduced to the and James Whitmire as part of our leadership
Chapter at our 2021 Annual Meeting and HELLO team. Come join us and welcome these
Conference on June 11 at 6:00 pm. We are so dedicated individuals to the team.
Page 7, The News Infusion Spring 2021
Executive’s Welcome
Summer Brings Us Hope
It is hard to believe our young adults are With our new name reflecting our inclusiveness
graduating from high school and college with to show support for ALL BLEEDING
many summer vacations beginning soon. I am DISORDERS, we are hoping our outreach will
hopeful as we look forward to a new normal after provide everyone a place to belong and find
the COVID-19 pandemic. It has been challenging support. Our membership is growing leap
for us all. I am also hopeful we can continue and bounds; however, our mission has never
the planning of small events, educational changed. We will always support and honor
opportunities, and support group activities. our past accomplishments and sacrifices of
Please check our website, read our e-blast, and our hemophilia and von Willebrand Disease
stay connected so you are aware of what we community. Our transformation journey to the
have to offer. But first, I ask you all to
join me at our virtual Annual Meeting
and HELLO Conference beginning on
June 3 with a pre-conference Kahoot
and sponsor appreciation; Friday, June
11 with our Keynote Speaker, Chapter
Awards, new board members and
scholarships, and show your support to
those organizations and members who
have stood by us providing support
and funding to the Chapter throughout
the pandemic. Please be sure to read
our 2020 Annual Report (Gratitude
Report) which was sent to all our
members, investors, and funders. It is
posted on our website in the About
Us link. We had an incredible year last
year, despite very difficult times, and will honor new name will roll out slowly, but a new logo
those involved at the annual meeting. and website is on its way and we are excited! We
Additionally, our educational and support group hope you are too.
sessions are going to be plentiful on June 12 and I’ll keep this short as you have so much to read
19 as we have worked hard to meet this year’s in this issue; keeping you informed of all we have
theme, “Together, Our Journey Continues”. We will been up to and will be doing the rest of the year.
have fun and interactive sessions for adults, teens, Our phone is always charged, and our door is
and kids; with education and support related open, so I encourage you to call upon us or to
to gene therapy, advocacy, mental health and just say hello! I appreciate your support and the
wellness, stress reduction with music and laughter, support of all who allow us to be available to the
Von Willebrand Disease, and to include our bleeding disorders community in South Carolina
“Understanding the Clotting Cascade” session for and beyond. Have a wonderful summer and I
all our other sub-groups or rare platelet disorders. hope to give you a social distance “hug” soon!
This includes extreme factor deficiencies like Warmest regards,
Factor 1, 7 or 13, and all in between. Sue
Page 8, The News Infusion Spring 2021
Community Engagements
50 Days of Awareness: March Bleeding
Disorder Awareness Campaign
February 28 – Bleeding Disorders
Awareness Month Kick Off Event
We kicked off Bleeding Disorders
Awareness Month and our Red
Tie Campaign on Rare Disease
Day in downtown Greenville. We
held an extremely small, masked,
and socially distant outside
event where we unveiled our
“Are You Seeing Red” awareness
sign in Falls Park. We also “Light
Greenville Red” with red lights
illuminating the Liberty Bridge
in Falls Park during the evening
and night through parts of March.
HSC’s Board and staff also kept up the annual to sign onto a letter to President Joe Biden to
tradition of taking a group photo on Liberty roll back rules that make it possible for health
Bridge, but this year everyone sported our insurance companies to implement “accumulator
“Carolina Strong” facemasks. adjustment” programs, which disallow counting
Washington Days co-pay assistance cards toward deductibles
During the first week of March, several HSC staff and out-of-pocket maximums. The hope is that
members (Sue Martin, Greg Witul, and Jeremy executive action will eliminate the need for
Williams) and Advocacy Coalition members legislation to address these policies that stand in
(Renita Johnson and Suzie Maloy) participated the way of people with chronic health conditions
in the National Hemophilia Foundation’s (NHF) like hemophilia from accessing their medications.
annual Washington Days. Of course, this year The collective advocacy efforts generated 33
all the meetings were virtual, but the group additional members to sign on to the Biden
was able to connect with staff of six members letter. Congratulations!
representing South Carolina in Congress. This There were a number of trainings leading up
included the offices of Representatives Jeff to the meetings and, as always, NHF staff did
Duncan, Nancy Mace, Ralph Norman, and William a fantastic job of preparing our group for the
Timmons. They also met with staff from the meetings. It was a week full of learning as well as
offices of both South Carolina U.S. Senators doing. And it was an honor to represent South
Lindsey Graham and Tim Scott. Carolina in the halls of Congress (albeit virtually).
The group asked for continued funding for Advocacy Prep Training on the 9th
federal organizations vital to bleeding disorders For our last State Advocacy Prep Session, we
research and education, namely the Health reviewed all our updated materials, our talking
Resources and Services Administration; the points, and confirmed everyone’s schedule. We
Centers for Disease Control and Prevention; reminded the Advocates that our Rare Disease
and the National Institutes of Health. The Advisory Council House Bill was no longer H3233
group also asked for members of Congress Continued on page 9
Page 9, The News Infusion Spring 2021
Continued from page 8
throughout the month.
but was now H3956, highlighted that a Rare Members asked their elected officials for
Disease Advisory Councils will provide a unified continued funding for the Hemophilia Assistance
voice for rare disease patients, and will create Program, a premium support initiative for
a forum to make recommendations to elected people with bleeding disorders operated by the
officials and other state leaders about pressing state Department of Health and Environmental
healthcare issues. We also touched on the Control. They also asked for support for a bill
need for continued support for the Hemophilia (H3956), that would create a Rare Disease
Assistance Program and that we want to start Advisory Council in the state. The measure at
tackling Anti-Accumulator Adjustment Program the time was in the Health and Environmental
Legislation. After a brief reminder to dress for Affairs subcommittee of the House Medical,
success, everyone went to bed in preparation of Military, Public, and Municipal Affairs Committee.
the marathon of Zoom meetings that the next As part of the effort to get it passed, Sue Martin
two days would see. provided testimony to the subcommittee on
State Days 10th–11th and throughout the month the functions and importance of the Council.
Throughout the second week of March, more Finally, members alerted their legislators to
than 30 HSC members engaged their state “accumulator adjustment” programs (see
elected officials to advocate for policies and “Washington Days” above) being implemented in
programs that impact people living with health insurance plans sold in South Carolina.
bleeding disorders in our state. The group It was a busy but productive week. In addition
held 17 meetings with members of the South to many longstanding Advocacy Coalition
Carolina Legislature, with several more scheduled
Continued on page 10
Page 10, The News Infusion Spring 2021
Continued from page 9 the ER, being stereotyped by the medical staff
members, we had participation from a number once there, and lack of education by the doctors
of new advocates. We welcome to our advocacy about Bleeding Disorders and Hemophilia. This
ambassador program, Woody Ford and Holly film was posted to our social media accounts so
Penfield. It was exciting to see them advocating it can be accessed and understood by both our
for themselves and their families. Everyone community members and the general public.
did a fantastic job! We are grateful to all our This meeting was in partnership and sponsored
advocacy sponsors throughout the year and by DrugCo.
our Advocacy State Days for their support!
Thanks to Takeda and Genentech, PhRMA, CSL
Behring, Octapharma, Drugco, and our NHF
State Based Coalition partners; Novo Nordisk, March 16 – Living Independently, Choices and
INC. (Founding sponsor), Bayer Healthcare, Risks: Teen Support Group Activity
BioMarin Pharmaceutical Inc., CSL Behring, To recognize Bleeding Disorders Awareness
Genentech, Grifols, The Hemophilia Alliance, Month with our Teen Support Group we hosted
Pfizer Inc., Sanofi Genzyme, Spark Therapeutics, an event covering Living Independently, Choices
and Takeda. and Risks that saw 20 members attend. We
March 11 – Blood Brothers Meeting also took this opportunity to come together
As part of our Bleeding Disorders Awareness with teens and their parents for a fun evening of
Month Blood Brothers meeting, we social interaction among friends. This event was
produced and promoted a short film “Candid in partnership and sponsored by Takeda.
Conversations Among Brothers” with seven
members. This talk was created to bring to light
some of the issues our members face going to
the ER, including reluctance to actually going to
Continued on page 11Page 11, The News Infusion Spring 2021
Continued from page 10 the talk, we had a memorable and meaningful
March 25 – CARE Program: Ladies Support bleeding disorders month project; Make One,
Group Activity – “Laughing Through Stress” Share One, and Give in support of those affected
Eighteen ladies from our community got together by bleeding disorders. Each member made two
for a fun interactive evening and heard from Lori, custom Bleeding Disorder Awareness Month
a Common Factors Advocate with CSL Behring. themed bracelet with blood drop pedants. The
Lori’s story about “Laughing Through Stress” was first one was for themselves, while the second
one many members could identify with. Following Continued on page 12
Exploring the science behind gene
therapy research
Gene therapy research has the potential to bring an entirely new option to people
with specific genetic conditions. Many gene therapies are in clinical trials to evaluate
the possible risks and benefits for a range of conditions, including hemophilia.
HemDifferently is here with gene therapy education, providing accurate information
on the basics and beyond.
What questions do you have? Get them answered. Explore gene therapy
at HemDifferently.com
No gene therapies for hemophilia have been approved for use or determined
to be safe or effective.
©2020 BioMarin Pharmaceutical Inc. All Rights Reserved. MMRCGTH0226 0420Page 12, The News Infusion Spring 2021
Continued from page 11 April 17 – World Hemophilia Day 2021
one was to be given to a friend while asking them We took a truly global approach to World
to support our Red Tie Campaign fundraiser. The Hemophilia Day this year with 10 community
event was a great success. We thank our partner, members, from three continents, and both
CSL Behring for the opportunity to connect. hemispheres. Using our Zoom platform, the West
Virginia Chapter partnered with us to watch a
short film on living with Hemophilia in Kenya and
hear from two international speakers, Joshua
March 29 – HSC Member Conversations Bwambale a medical professional and hemophilia
As the capstone to Bleeding Disorders advocate from Uganda and Mariana Battazza
Awareness Month, we held an open forum Freire, president of Associacao Brasileira
for the community called HSC Member de Pessoas com Hemofilia in Brazil. In Mr.
Conversations. This event was a prompt for Bwambale’s speech, he discussed many of the
discussion regarding a number of changes issues of those with hemophilia face in Uganda,
our organization, our country, and the world, accesses to care, high costs, low employment,
is facing. Topics discussed included what a and the ongoing issues with HIV/AIDS. In her
post-COVID world will look like, inclusiveness address, Ms. Freire explained the differences
in the hemophilia and bleeding disorder between the medical systems in Brazil and the
community, what’s happening with Advocacy, US. For those living with hemophilia in Brazil,
the need for diversity, what are we missing as treatment is provided free by the government,
an organization, and anything the membership but you have no choice in the product you take.
wanted to bring up. The event was very well You get what the government gives you, which
attended with 18 member families and it has can change from month to month. She also
been an impetus for implantation for new ideas debuted a board game the Associacao produced
and new ways of approaching things. We also to help children learn about hemophilia, the
thanked the community for the funds raised importance of infusing, and staying on their
so far in our Red Tie Campaign and asked for regimen. The evening concluded with an
continued support to reach our goal. international themed game of Kahoot.Page 13, The News Infusion Spring 2021
2021 Bleeding Disorders Medical Symposium
On the weekend of April 23 and 24, Bleeding the second session of the night, the film Impact
Disorders of South Carolina held a first for the Stories from South Carolinians Living with a
organization by hosting the South Carolina Bleeding Disorder was screened, and HSC member
Bleeding Disorders 2021 Medical Symposium. Hunter Day told the doctors his story of living
By inviting over 400 members of the medical with Hemophilia and his struggles in finding
community, this symposium was an opportunity to stable treatment. Bleeding Disorders of South
bring together; hospital administration, healthcare Carolina Board Member, Dr. Joey Krakowiak,
professionals, ER physicians, hematologists, gave a “doctor to doctor” perspective of being
and primary care physicians practicing in South caregiver to a child with a bleeding disorder, when
Carolina who currently have patients in their to suspect a bleeding disorder as a diagnosis, and
practice or emergency care, or potential future things to keep in mind if someone with bleeding
patients who have a diagnosis of hemophilia or disorder comes into your office or in your ER. The
related inherited bleeding disorders, as well as night concluded with a joint presentation of The
patients and caregivers, for specialized medical Comprehensive Model of Care for Hemophilia and
education in the healthcare needs of this Bleeding Disorders: The Hemophilia Treatment
population. As an incentive we were able to offer a Centers in South Carolina by Dr. Stephanie
Continuing Medical Education Credit to those who Ambrose, DO, Nurse Coordinator Robin Jones, Dr.
attended one of the sessions. Leslie Gilbert, MD MSCI, of Prisma Health, and Dr.
The first night of the Symposium saw Shayla Bergmann, MD of the Medical University
introductions from Bleeding Disorders of South of South Carolina. In their 45-minute presentation,
Carolina and the SC Hemophilia and Bleeding the doctors covered all the services the HTC offers
Disorders Advocacy Coalition as well as a little as part of the Comprehensive Care Model, the staff
about how the symposium came to fruition. In Continued on page 14
To learn more about our Free Trial and Co-Pay Assistance
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Contact your
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PAUL BRAYSHAW
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EMAIL:
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©2019. Octapharma USA Inc. All rights reserved.
Date of preparation: 4/2019. WIL-0206-CADPage 14, The News Infusion Spring 2021 Continued from page 13 staff present. The first was to recognize that of each location, how the HTC works with your women with hemophilia DO bleed and be aware primary doctor and preferred hematologist, and of symptoms across the lifespan in women what patents had to say about utilizing the HTC. with bleeding disorders. The second was to Doctor Bergmann talked about the services, staff, become familiar with the warning signs of heavy and new Hemophilia Clinic facilities at the Shawn menstrual bleeding, the third was to recognize Jenkins Children’s Hospital. that many treatment options are available for Day two of the symposium opened with The heavy menstrual bleeding in women and girls with Hemophilia Awareness Series presented by Dr. hemophilia and other bleeding disorders, while Joanna Davis the Medical Director of Pediatric the fourth was to understand the importance Comprehensive Hemophilia Treatment of the of checking for iron deficiency in women with University of Miami. The one-hour program bleeding disorders. Lastly, a brief review of the thoroughly explained how Hemophilia A and B are initial laboratory testing for bleeding disorders identified, diagnosed, and treated. She also dove was talked about. Over the course of an hour, Dr. into current treatment options, possible future O’Brien addressed each point in a way that all treatment options, techniques for rearing a child present could understand and incorporate into with a bleeding disorder, and how everyone with their practice. a bleeding disorder is truly on their own unique The final presentation of the two-day event treatment journey. Everyone who was present at performed double duty, covering both the session and completed an evaluation form orthopaedic care and emergency rooms, and received one Continuing Medical Education Credit was hosted by Sue Geraghty, RN, MBA. Entitled through Dannemiller. Emergency and Orthopaedic Issues for Persons The second session given by Dr. Sarah O’Brien, with Bleeding Disorders, Ms. Geraghty opened MD, Associate Professor of Pediatrics at with what may bring a patient with a Bleeding Nationwide Children’s Hospital in Columbus was Disorder to the Emergency Room before Shemophilia: Women with Bleeding Disorders. transitioning to what the treatment priorities This very well attended presentation touched should be. This part of the session closed with on five major points for the doctors and medical Continued on page 15
Page 15, The News Infusion Spring 2021 Continued from page 14 adjunctive therapies physical therapy to surgical all the special considerations, caveats, and options. other things to be aware of when treating Over four hours spread across two days, someone who hs or could have a bleeding healthcare professionals, caregivers, and disorder. In the second half of her talk, Sue patients received a deeper understanding of addressed orthopaedic issues that arise because Hemophilia, Bleeding Disorders, and the medical of bleeding disorders. This section addressed complications that arise from them. Special chronic synovitis, degenerative arthritis, and thanks to Genentech, Spark Therapeutics, Inc., the self-perpetuating cycle of hemarthrosis. Takeda, Hemophilia Federation of America, and This was followed by possible treatments from Continued on page 16
Page 16, The News Infusion Spring 2021
Continued from page 15
the Hemophilia Foundation of Greater
Florida for their support of our medical
symposium. Another special thanks go to
the members of the Medical Symposium
Planning Committee, Ms. Suzanne Martin,
Mr. Gregory Witul, Ms. Cristal Day, Dr.
Joseph Krakowiak, and recognizing the
support and dedication of Dr. Stephanie
Ambrose, Ms. Robin Jones, Dr. Leslie
Gilbert, and Dr. Shayla Bergmann.
Without their efforts this symposium
would not have been possible, thank you.
All four sessions can be viewed in their
entirety at tinyurl.com/BDASCYouTube
and the Symposium program and
outlines of the sessions can be found on
the HSC website at hemophiliasc.org/
medical-symposium-2021.
Talk to your doctor and see if
ADVATE® is right for you.
For more information, please visit AdvateRealLife.com
Copyright © 2019 Takeda Pharmaceutical Company Limited. 300 Shire Way, Lexington, MA 02421. 1-800-828-2088.
All rights reserved. TAKEDA and the TAKEDA logo are trademarks or registered trademarks of Takeda Pharmaceutical
Not an actual patient. Company Limited. ADVATE is a registered trademark of Baxalta Incorporated, a Takeda company. S51218 09/19Page 17, The News Infusion Spring 2021
Support Groups Outreach and
Community Connections
February 26 – Pizza Party Family Feud April 6 – Constructive Conversation:
As part of our Rare Disease Day in South Educational Community Connections Program
Carolina celebration, HSC hosted a Pizza Party On April 6, HSC and Pfizer came together
and Family Feud night, in partnership with for a community connection virtual program
Octapharma. Member families were divided up that discussed how to have Constructive
into groups and went head-to-head. With the Conversations. This program event was
theme of Bleeding Disorders, and Octapharma’s intended for all the support groups and the
Nurse Educator acting as MC, there were some entire membership of the bleeding disorders
controversial answers and non-answers, but in community. Using a series of slides and some
the end, there was a true spirt of community as comparison videos, Rachel Cooper-Leal provided
members helped each other answer questions. a comprehensive overview of how caregivers can
The big winners of the evening were the Baird gain a better understanding and learn new ways
and Tucker Families who each took home a to effectively communicate with individuals living
copy of the book, “Seven Summits” by Chris with hemophilia. The approximately 40 members
Bombardier. Following the game, there was a of HSC that were in attendance came away with
brief informational session about the Bill for the better ways to communicate.
Rare Disease Council Advisory Council.
Continued on page 18Page 18, The News Infusion Spring 2021
Continued from page 17
6 months old. The group interacted in various
April 8 – Blood Brothers Meeting with Jim
conversations with support for challenges faced
Stroker
by many. A complication during tumor removal
For our April Blood Brothers Meeting, HSC
surgery caused T-2 level paraplegia, and as a
hosted a very special speaker Coach Jim Stroker.
result, Seth has used a manual wheelchair ever
A personal friend of Blood Brother Ward, Jim’s
since. However, he has been determined to
mission has been to Inspire and Empower people
lead a healthy and active lifestyle despite his
to reach their highest potential by creating
childhood diagnoses. An avid sports enthusiast,
harmony and balance in mind, body, and spirit
Seth lives in Denver, CO, and plays for the Denver
as a global motivational speaker. Many of the
Rolling Nuggets basketball team as part of the
Brothers in attendance were uplifted by Coach
National Wheelchair Basketball Association
Stroker’s attitude, encouraging style, and
(NWBA) and has aspirations to play for Team
tenacious world view. Coach Jim Stroker left
USA in the Paralympics. He also coaches the
such an impression on the Brothers that HSC
Denver Jr. Rolling Nuggets team. Seth has been
spun out the Motivational Monday’s program
involved with the bleeding disorders community
with him, this time for all members of the
for the past 20 years, participating in local and
Bleeding Disorder community.
national events. Seth has his bachelor’s degree
in Mechanical/Biomedical Engineering from the
University of Central Florida (UCF). We thank
Octapharma and DrugCo for their support of the
Blood Brothers Program.
May 13 – Blood Brothers Meeting
The Blood Brothers heard from Seth Rojhani
who was diagnosed with severe Hemophilia A
and cancer, on the same day when he was justPage 19, The News Infusion Spring 2021
Save the Dates! in Greenville. Sponsored by Medexus and
BioMatrix, the ladies will enjoy brunch and
We are developing a number of upcoming conversation on self-care.
events, more details about them will be
forthcoming. Check our websites for updates.
Space will be limited so make sure to register
as soon as you can. COVID compliance rules
and guidelines from the Chapter will be strictly
enforced for attendance, with waivers having to
be signed.
July 16 – Blood Brothers Gathering, The Grand Aug 8-10 – Teen Retreat, Camp Canaan,
on Main, Columbia Rock Hill
The Blood Brothers are tentatively planning Our 2021 Teen Retreat is on! Only three days,
their first in-person event for July 16 in the two nights this year we’ll be heading out to
Tap Room at The Grand on Main. Located in Camp Canaan to enjoy as many camp activities
Columbia, the Tap Room at The Grand sports as we can! We’ll let you know when registration
a pool table, arcade games, jukebox, with food is open on our website.
and drinks to be supplied for the Brothers
July 31-October 2 – Inspiring Shots (Golf Clinic),
to enjoy. There is no set schedule, speaker,
The Preserve at Verdae, Greenville
or presentations, just an opportunity for the
For adults (over 18) with bleeding disorder and/
Brothers to get together, talk, laugh, and
or their families. Learn how to golf or improve
share.
your golf game! This 8-hour private golf class
with members of HSC is for the beginner to
advanced with hands-on golf instruction and a
great experience to connect with others. Held
over several weekends, Pro Golfer Perry Parker
will also be in attendance at one of the clinics!
An opportunity to attend and help with the
JNC and a round of golf with Perry and other
participants around the country are included
July 17 – HSC Camp Connections, Saluda
in this four-region event. This program is made
Shoals Park, Columbia
available through the Wingman Foundation and
For the second year in a row, HSC will be
CSL Behring and we are excited to see it roll out.
hosting “Camp Connections” at Saluda Shoals
Park. Once again, there will be park activities,
lunch, sponsor booths, and the opportunity to
gather, chat, and enjoy the park on us!
June 26 – Ladies Support Group, Coffee
Underground, Greenville
Our Ladies Support Group will be having an
outing on June 26 at the Coffee UndergroundPage 20, The News Infusion Spring 2021
Voices of The Community
On Advocating I think I am most passionate about women
Jameelah – Advocating, with bleeding disorders and getting proper
Educating, and Elevating care. I feel there is a great need for it, but it
doesn’t always get the attention it deserves.
I personally got involved in
I’m also passionate about healthcare
advocating after the birth of
education especially for young adults
Eli. I have always had some
becoming independent.
ties to advocating, but it
didn’t personally affect me On Technology
until I had Eli. I never fully Edna – From Tech Novice to
understood the importance Expert in a Year
of advocating, nor did I understand the When HSC began its
struggles my dad and my nephew went Virtual Innovation Program
through. What I did know was my dad was (VIP) Edna was early to
suffering from an illness and sometimes we sign-up, even without
went to events with others like him. In New the knowledge that she
York City I was very active in my nephew’s would be receiving a
care. He was born in 1990 and I spent a lot of digital device as part
time in the hospital with him. I was very well of the program. When
versed in his care and needs, but sadly there asked about her very
was very little support from a hemophilia first experience with the new product, she
community there. Thankfully from the replied “I didn’t even know how to turn on
moment I got pregnant with Eli I was very a computer like that” laughingly. But after
supported here in South Carolina and that a few phone calls to the Chapter and a
made being involved very easy and inspired walkthrough, Edna soon had the hang of it.
me to want to do more. It was equally as Within three months Edna was adept enough
important to me to get my family just as to register, log on, and participate in every
involved. event she could. “I’m really proud of this
Advocating is very important to me because iPad… I get to connect with you all… and I love
I didn’t have any support from a hemophilia being with you all”.
community nor my parents as a young adult. Being a VIP member and having her iPad,
I believe the support wasn’t there from my Edna looks forward to post-COVID. “I see
parents because they just didn’t know, and myself using it… all the time.” And “I don’t
the resources weren’t available like they are have to ask anybody to do it for me, I can
now. My role as a parent and a member of do it all myself.” Edna understates her
the community is to do my part and make proficiency, as she was able to singlehandedly
sure that my children are educated and reenroll her device to HSC’s network after
aware of services available to them and it accidently got removed. But for now, she
support those that are unable to do it for is thankful for this new technology and the
themselves. ability to connect with her HSC family.
Continued on page 21Page 21, The News Infusion Spring 2021
Continued from page 20
On Connecting were times when I was growing up that the
Tim – Crossing the Physical and Digital Divide irrational fear of hemophiliacs spreading HIV
and AIDS in the late 80’s and cause too many
Tim has been a longtime member of HSC, but
to only know that fear and they could not
due to a busy schedule and distance, he’s never
see anything further out from them. Now, we
been able to attend any in person events.
educate, assist, advocate, and simply fight for
That all changed with COVID, Chapter going
many families so we may live our lives to the
digital, and Tim becoming a Virtual Innovation
fullest extent possible.” – I’m Tim Swanburg
Program (VIP) member. In short order, Tim
and I approve this message.
went from being a voice on the phone to a
regular attendee of events,
an esteemed member
of the Blood Brothers,
and a fierce advocate
for Bleeding Disorders
in local politics, all from
the ease and comfort
of his home. “The VIP
program, providing that
virtual connection that
had not been there before,
provided me a method
of communication and
participation that even if I
am forced to be immobile
to heal, or another issue
from hemophilia, it didn’t
slow me down. There
Von Willebrand Community
Our Community Grows
Our VWD community is growing by leaps and symptoms, and types of VWD, as well as
bounds! We’ve had more VWD families join those that are specific to women. Treatment
us in the last couple of weeks than any other approaches available to people living with VWD
disease state. We are hoping to host a VWD will be described, as well. Time to connect and
focused event in the near future, but until then share with this unique community will be during
make sure to join us at the Annual Meeting the this session. Make sure to join us to get to know
afternoon of Saturday, June 12 as Betsy Koval, your VWD Community. PS: A special HSC gift
RN BSN presents “von Willebrand Disease A for the VWD community will be provided in the
to Z”. This program sponsored by Takeda, will conference box so be sure to join us for this
explain the inheritance patterns, the various special event.red!
¡Necesitamos su voz y experiencia para
decirnos lo que estamos haciendo bien,
Page 22, The News Infusion Volume
y también las cosas 9, Issue 4
en que necesitamos
mejorar!
Complete la encuesta
en: www.htcsurvey.com
Have You Heard? o llene y devuelva la encuesta que
recibió por correo.
Cualquier encuesta debe
Let Your Voice Be Heard! Take the National completarse por lo menos antes del
30 de junio del 2021.
HTC Patient Satisfaction Survey Today!
The Third National HTC ¡La tercera encuesta
nacional del Centro
Patient Satisfaction Survey de Hemofilia para medir el
is now open! nivel de satisfacción del
We need your voice and experience to cliente ya está abierta en la
tell us what we’re doing right, and areas red!
we need to improve!
¡Necesitamos su voz y experiencia para
decirnos lo que estamos haciendo bien,
Take the survey at www.htcsurvey.com y también las cosas en que necesitamos
or fill out and return the survey you mejorar!
received in the mail. Complete la encuesta
en: www.htcsurvey.com
o llene y devuelva la encuesta que
Surveys must be completed by recibió por correo.
June 30, 2021. Cualquier encuesta debe
completarse por lo menos antes
del 30 de junio del 2021.
Hemophilia Treatment Centers (HTCs) across seguimiento a las encuestas hechas en el 2015 y
theThe United
ThirdStates
National areHTCparticipating in the 2021 2018. La información de los pacientes y familias
Patient Satisfaction Survey
National HTC Patient Satisfaction Survey! If you, ayuda a los Centros de Hemofilia identificar
is now open!
or someone you care for, had contact with an dónde tienen puntos fuertes y dónde tienen que
We need your voice and experience to
HTC in 2020,
tell us what they
we’re doing want
right, to hear from you!
and areas mejorar. Su voz puede ayudar a los Centros de
we need to improve!
You can take the survey online at www.htcsurvey. Hemofilia aprender y mejorar. Favor de visitar
com.
Take theThe survey
survey closes on June 30, 2021.
at www.htcsurvey.com www.htcsurvey.com para completar la encuesta.
or fill out and return the survey you
This survey receivedisin a
thefollow
mail. up to the surveys done La encuesta solamente toma algunos minutos de
in 2015 and 2018. The input from patients and su tiempo. Gracias por su contribución.
Surveys must be completed by
families help HTCs identify areas where they may
June 30, 2021. HSC supports Efren from the
have strengths and where they need to improve.
Philippines as part of Save One Life
Your voice can again help HTCs learn and
improve. Please go to www.htcsurvey.com to take This year HSC is supporting Efren Jake as part
the survey. The survey only takes a few minutes of Save One Life. Efren is nine years old and lives
of your time! Thank you for your valuable input! in the Philippines. He has
¡Que su voz sea oído! ¡Complete la encuesta moderate Hemophilia A
nacional de los Centros de Hemofilia para medir but is still a very active 4th
la satisfacción del paciente! grader and enjoys playing
¡Los Centros de Hemofilia en los Estados Unidos basketball. When he does
están participando en la encuesta nacional de have a major bleed Efren
2021 de los Centros de Hemofilia para medir la travels almost 20 miles
satisfacción del paciente! Si usted o alguien que to the nearest hospital
usted cuida ha tenido contacto con el Centro de for treatment. When he
Hemofilia en el año 2020, ellos quieren escuchar grows up, he wants to be
de usted. a doctor. This sponsorship
Puede completar la encuesta en la red en www. was provided in part by
htcsurvey.com. La encuesta termina el 30 de a small portion of the proceeds of the Red Tie
junio, 2021. Campaign. Thank you all for your tremendous
Esta encuesta se hace con el fin de dar support!Page 23, The News Infusion Spring 2021
HSC Bleeding Disorders Advisory Committee (BDAC)
On April 13, HSC’s BDAC met virtually for look to enhance the quality of life for those
the second meeting of the year to discuss affected by bleeding disorders and to support
partnerships in providing educational programs the Chapter’s mission of service. We are so
and services for the Chapter. The goals and grateful for the time to connect, discuss, and
objectives of the committee are to assist brainstorm how to bring the best in education,
in the services, educational, and advocacy support, and advocacy to those we serve
needs of the South Carolina bleeding disorder collectively in South Carolina. Thanks to our
community. It is comprised of individuals who partners for their dedication!Page 24, The News Infusion Spring 2021
With Appreciation to Our Donors and Sponsors!
GENERAL DONATIONS Janet Jaspers Lindsey Pittman Tim and Bonnie Hill
Blackbaud Giving Fund/Your Jeanette Bloss Lisa Bordelon Timothy Hill
Cause John Tiller Lori Hamilton Tom and Janet Shearer
The Benevity Community Fund / Jordan Martin Margaret Zieche Wendy McKenzie
United Healthcare Joseph Krakowaik Michael Davidson
Corporate and Sponsorships
Network for Good
Michael Weeks Colburn Keenan Foundation
Midway Presbyterian Church CSL BEHRING
Drugco
Bleeding Disorders Genentech
Awareness Month - Red Tie Octapharma
Campaign Fundraiser
Novo Nordisk
Aaron Smith Pfizer
Becky and Randy Sdies PHRMA
Brantley Smith Takeda
Bryce Martin
Caroline Berger Par for the CLot Charity Golf
Catherine Lowman AE Solutions
Charlene Cowell Flowserve
Christina Samuelsen GA West and Company Inc.
Judy Burnes Michelle Lee
Corbin Martin Jacobs
Karen Kranz Patricia Tucker
Cristal Day Keystone Constructors, INC
Kathy Campbell Retha Murray
Ed Brennan Metromont Corporation
Kerrie Barnes Shelley Crisp
Fernando Andrezjevski In Memorial of Mark
Kristen Smith Sheri Nixon
Gail Buchanan B:7.5" Sue and Ric Martin Eichelburger
Laura Turnmire
Gregory Witul Edward and Louise Skinner
Leslie Gilbert T:7.5" Susan Barnes
Heaven Farina
S:7.25"
WHAT’S NEXT?
YOU DECIDE.
At Genentech, we’re committed to creating
programs for you, with you. From a web series
focused on finding the magic in life, to a
S:4.25"
T:4.5"
tournament for gamers, to workshops designed
to help you think well, do well, and be well, we’re
here to help you take on what comes next.
VISIT GENENTECHHEMOPHILIA.COM
TO SEE HOW WE’RE CREATING
WHAT’S NEXT, TOGETHER.
The Genentech logo is a registered trademark of Genentech, Inc. GENENTECH IN
©2020 Genentech USA, Inc. All rights reserved. M-US-00008064(v1.0) 10/20 HEMOPHILIAPage 25, The News Infusion Spring 2021
Advocacy Action
Advocacy Days Wrap-Up Our next Coalition meeting and training session
As most of you already know, in March we held will be June 19 at 9:00 am as part of the 2021
HSC’s annual “Advocacy Days” through virtual Statewide Annual Meeting & “Virtual” HELLO
meetings and phone calls with state lawmakers. Conference.
By the end of the month, we had completed Rare Disease Advisory Council
more than 22 meetings with elected officials. Making Its Way Through the Senate
For those with whom we could not schedule We are pleased to let you know that the
Zoom or phone calls, we reached out to them legislation (H.3956) to create a Rare Disease
with information about the important policies Advisory Council in the state of South
and programs we would like them to support Carolina gained final passage in the House of
this session. These include continued funding Representatives on April 22. This was a huge
for the Hemophilia Assistance Plan, a bill to accomplishment, and we’d like to start by
create a Rare Disease Advisory Council in the thanking each of you for all your hard work in
state (see article below), and information about getting this bill passed.
combatting “accumulator adjustment” policies in It has been a long process of meetings with
health plans sold in South Carolina. As is typically the Department of Health and Environmental
the case during a busy legislative session, it Control (DHEC), lobbying our elected officials,
was a whirlwind of a few weeks. We cannot say and working with groups like the National
enough about our advocates who were juggling Organization for Rare Diseases to get to this
work and personal responsibilities to make point. The bill is now in the Senate where it was
these meetings happen, even when they were introduced in late April and assigned to the
rescheduled at the last minute or shifted to a Medical Affairs Committee.
different day. They bent over backwards to make The measure passed the House after “crossover
these events happen, and we know the fruits of day,” which means it would need a two-thirds
their labors will be realized down the road. majority vote in the Senate even to bring it up
We wanted to recognize all advocates who on the floor. That’s okay though because the
participated in the 2021 Advocacy Days events. South Carolina Legislature operates on a two-
Note that these are merely the ones on our year cycle. This means that next session, we
registration list––many of them had friends and can pick up right where we left off. It also gives
family members, including their children, join in us plenty of time to identify potential sponsors
the meetings. This goes a long way to building and address any questions or prospective issues
relationships and making connections with senators may have with the bill.
those who shape laws that impact the bleeding You all began putting the bug in senators’ ears
disorders community in South Carolina. during Advocacy Days, and that is going to be
David and Lynn Bennett, Laura Benton, Marah a huge help to us at this point. We have already
Breitweiser, Robert Butler, Shelley Crisp, Cristal met with several of them who expressed
Day, Hunter Day, Jean Ford, Renita Johnson, Joey interest in becoming a co-sponsor. One of these
Krakowiak, Jameelah and Anthony Malcolm, Suzie is Senator Mia McLeod, who represents parts
Maloy, Tiffany Maness, Sue and Ric Martin, Holly of Columbia. She personally has been impacted
Penfield, Edna Rabb, Aaron and Brentley Smith, by rare diseases and has been sympathetic to
Coree Snider, Timothy Swanburg, Marilyn and our cause.
Keith Ward, Jeremy Williams, Gene and Karen In addition to waiting on her final “thumbs up” to
Wilson, Greg Witul
Continued on page 26You can also read
