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2026 Fall Advocacy & Medical Symposium
                                                  Raise Your Voices at FAMS!
                       Advancing Care. Protecting Access. Empowering Every Voice.
Why We Still Advocate

While groundbreaking treatments continue to transform the lives of people living with bleeding disorders, access to those treatments—and to comprehensive care—cannot be taken for granted. FAMS will explore how medical innovation, public policy, and patient advocacy work together to ensure every individual has access to the care they need today and for generations to come.

Participants will leave with:

  • A better understanding of new treatment advances.
  • The latest updates on healthcare policy and insurance access.
  • Practical advocacy skills.
  • Confidence in sharing their personal story.
  • Opportunities to stay engaged through BDASC’s year-round advocacy efforts.

 

This is more than a conference .It’s a movement. It’s your chance to connect, learn, lead, and advocate alongside those who share your purpose and passion for access to quality and affordable treatment care for South Carolinians living with bleeding disorders and rare diseases.

“Where Health Meets Policy, and Voices Drive Action”
Join South Carolina advocates, healthcare professionals, and national changemakers for the Fall Advocacy & Medical Symposium (FAMS) — a powerful gathering focused on health equity, rare disease advocacy, and policy reform. 
 
More Than a Conference: We’re FAM
“FAMS” stands for Fall Advocacy & Medical Symposium — but it also sounds like fam, and that’s no coincidence. We are a family of advocates, patients, professionals, and allies. We stand together, lift each other up, and fight for a better future — as one.
 
Featured Highlights
  • New Treatments & Services Showcase
  • Hands-On Advocacy Education, Training, and Healthcare Updates
  • Strategic 2027 Legislative Planning Sessions 
  • Involvement with YOUR Voices in National Health Equity 
  • Children & Teen Empowerment Programming
  • Family Engagement and Fellowship
  • Infusion and Injection Clinic
  • Sponsor Exhibits – all products and services
 
Why FAMS Matters
FAMS isn’t just another symposium — it’s where community meets action. Connect directly with bleeding disorders experts, healthcare leaders, and policymakers. Bridge lived experience with professional insight to ensure grassroots voices drive systemic change. Join a space where your story truly matters.
 
Why Now?
Health disparities and access gaps are widening — we must act together.  National healthcare policy is shifting. Your voice can shape South Carolina’s priorities.  Our community deserves compassionate, equitable care — now more than ever.
 
Join Us to Grow, Learn, and Advocate Together!
Register now to be part of a vibrant community committed to growth, learning, and meaningful connection. Then take the next step by participating in our upcoming advocacy efforts—whether by attending our events, joining virtual legislative meetings, writing emails or letters, or making phone calls. Together, we can champion access to quality health care and treatment for our community.
 
2027 Priorities:
BDASC Legislative Breakfast – January 13, 2027, 8-10am – Columbia Capitol
BDASC Advocacy State Days – February 23-24, 2027 – Columbia Capitol
NBDF Washington Days – March 3 – 5, 2027

October 9-11, 2026

FRIDAY: 4:00PM – SUNDAY: 12:00 PM 
Marina Inn at Grand Dunes – Myrtle Beach
8121 Amalfi Place Myrtle Beach, SC 29572

Our participation waiver has been updated.  Before registering for this event, please take a moment to review our Photo Release Waiver and Participant Expectation Waiver.  By registering for this event, you are agreeing to these terms and conditions and will be required to agree to this during the registration process. By registering, you are committed to attending the entire conference until Sunday at 12:00pm. 

Please note: There is a $25 registration fee per family or individual registering for this event. Registrations cannot be completed without payment.

Who is eligible to attend this special event:

  • Must be a member of BDASC and live in South Carolina.
  • Must have a bleeding disorder, or have a diagnosis of being a carrier of a bleeding disorders or be a caregiver of a family member living in your immediate household who has a diagnosed bleeding disorder.

We also want to emphasize that full participation, focus, and your commitment are expected throughout the event. While we strive to create a supportive and engaging atmosphere, this is a purpose-driven symposium. Your active involvement is essential to the success of our time together. Thank you for your understanding before registering to attend. You will be notified once your application is accepted to attend.

THIS EVENT is now closed to new registrations. If you want to be put on a cancelation waiting list, please contact Sue at the Office- 864-350-9941.

Fall Advocacy & Medical Symposium Agenda
INFORMATIONAL INVITATION
REGISTER HERE

 

PLEASE NOTE:  The hotel will require a credit card or debit card from each room reservation. They will place a hold of $100.00 per night which will be released upon check-out if no charges were placed on room and hotel services. BDASC only covers room and tax / resort fees per reservation. (if this is a challenge, contact Sue before registering) Registration closes on September 16th or when all spaces are full.  A waiting list will be created once we hit capacity. Space is limited, register today!

South Carolina Advocacy: 2026 Year In Review & Moving Forward Into 2027
Learn More About Our Advocacy Program
Accommodations at Marina Inn at Grand Dunes

We have a limited number of rooms reserved for this event in our hotel block.  Please be sure to register early if you need to request a room.  Community members are welcome to attend this event without a room if you live nearby or would like to secure your own accommodations. All attendees must be registered to attend FAMS. During the registration process you will be able to select your options and affiliations within the registration link.

Because of the selection of rooms available to us, we will place your party in the appropriately sized rooms.  Upon confirmation of your registration acceptance, we will ensure that this works for you and your family.  The two options that are available to us are the Grand Guest Room (sleeps up to 4) or the 2 Bedroom Suite (sleeps up to 8). Please Note: ONLY your immediate family members living within your home will be able to attend with you for this exclusive event.

Family Activities and Teen / Children Programming

Throughout the weekend event, there will be plenty of free time for families to connect and engage with other members of the community, building friendships and supportive relationships. Teens will gather in special sessions created especially for them as they learn to become more independent and goal driven. Children will also have the opportunity to engage in age appropriate activities selected just for them.  Due to the high cost of professional childcare, our Children’s program will be hosted by our contract programming, staff, board members, and volunteers.

Sessions will run concurrently during our adult sessions on Saturday.

Parents and Guardians: If your child or teen will be participating in any of our youth programming, you will be asked to sign a consent form during event registration. To help make the registration process as smooth as possible, we encourage you to review our updated consent form in advance by clicking the button below.

Teen & Childcare Consent Form
Children Childcare Programming

Ages 4 to (11) 12 years

Our Children’s Program is designed to be a fun, engaging, and interactive experience where kids can learn, play, create, and connect with others in the bleeding disorders community. Throughout the weekend, children will enjoy hands-on activities, games, crafts, team-building experiences, and age-appropriate educational opportunities in a safe and supportive environment. Our goal is to help every child build confidence, make new friends, and create lasting memories while families participate in the symposium.

Teen Programming Provide by Beyond Recreation!
Faciliated by Michael Jay

Ages (12) 13 – 18 years

Hello! Nice to Meet Me

Through improv, interactive games, and team-building activities, teens explore communication, confidence, self-awareness, and meaningful connections with others.

Uncover Your True North

Discover your personal values and develop a stronger sense of purpose through engaging activities designed to build confidence, leadership, and decision-making skills.

Parlor Games & “Smalls”

Classic games, creative challenges, and interactive fun designed to encourage teamwork, friendship, and authentic connection in a relaxed, phone-free environment.

Boomwhacker Hero

No musical experience required! Teens work together to perform recognizable songs while learning the importance of teamwork, creativity, communication, and having fun together.

Closing Reflection & Goodbye for Now

Celebrate new friendships, reflect on the weekend’s experiences, and conclude the retreat with an inspiring farewell that reinforces the connections built throughout FAMS.

Friday Evening Community Entertainment

Host Of The Party

To kick off the Symposium, Michael Jay Garner, with Beyond Recreation will launch the weekend with an hour of high‑impact fun designed to bring everyone together from the very start. This opening session blends interactive games, playful group challenges, and a lively showcase of Michael Jay’s signature circus skills, creating an atmosphere that’s engaging, energetic, and welcoming to all!

Sponsored by BDASC and presented by Beyond Recreation 

Quick Agenda Overview
Friday, October 9th 

4:00pm – Registration and Exhibits Welcomes

6:00pm – Opening Welcome

6:30pm – Dinner Presentation

7:30pm – Beyond Recreation

Saturday, October 10th

7:00am – 9:00am – Breakfast & Sponsor Exhibits, Infusion Clinic

9:00am – 4:00pm – Education Sessions 

6:00pm – Dinner Show at the Pirates Voyage

Saturday Evening Entertainment

Join us for an unforgettable evening of fun, fellowship, and entertainment! On Saturday night, we’ll head out together to enjoy a spectacular dinner experience at Pirates Voyage Dinner & Show in Myrtle Beach.

Relax and indulge in a delicious four-course feast while experiencing an action-packed adventure featuring daring pirate battles, breathtaking acrobatics, live animals, music, and family-friendly excitement. It’s the perfect opportunity to connect with friends, make new memories, and cap off an inspiring day together.

Come ready to laugh, cheer, and enjoy an evening you won’t want to miss! All ticets are included within the FAMS registration cost of $25.00 per family.

Sunday – October 11th

7:00am – 9:00am – Breakfast & Sponsor Exhibits, Infusion Clinic

11:00am – Education, Community Networking & Hotel Checkout 

12:00pm – Evaluations and Good-byes

Friday Night Opening Dinner Presentation, Sponsored by Sanofi

Protection Your Way

This tri-branded presentation is designed to educate patients on the cohesive Sanofi Hemophilia portfolio narrative. It provides a brief overview of hemophilia and introduces Sanofi’s treatment options—ALTUVIIIO, QFITLIA, and ALPROLIX—with balanced content across all three therapies. The presentation also includes an overview of HemAssist, Sanofi’s dedicated support program to help patients navigate their treatment journey

Presented by
Robin Jones, MSN, MHA, RN, CPN, CPHON
Nurse Navigator & South Carolina Hemophilia Treatment Center Nurse Coordinator

Saturday Educational Sessions
Industry Innovation Forums

Join us for an Industry Forum during our morning breakout sessions with companies of your choice and learn about their product pipeline and new innovative treatment options to treat bleeding disorders. 

  • CSL Behring: HEMGENIX® Gene Therapy
  • Novo Nordisk: Alhemo®
  • Pfizer: Hympavzi®
  • Takeda: VONVENDI®
  • Genentech: Hemlibra® Ambassador Program

Please note that the Bleeding Disorders Association of South Carolina (BDASC) does not endorse, recommend, or promote any specific treatment, product, provider, or therapy. Treatment decisions should always be made in consultation with your healthcare provider and care team. The information shared at the medical symposium is intended for informational purposes only and should not be considered medical advice.

 

The Future of Bleeding Disorders Care: Innovative Therapies, Emerging Treatments & HTC Priorities

Presented by
Dr. “Bobby” Duc Tran, MD, MSc
Chief Medical Officer, Hemophilia of Georgia

Robin Jones, MSN, MHA, RN, CPN, CPHON
Nurse Navigator & South Carolina Hemophilia Treatment Center Nurse Coordinator

~ Panelist Guests

The treatment landscape for bleeding disorders is evolving rapidly. Dr. Tran will provide a practical, patient-centered overview of today’s therapies, emerging innovations, clinical trials, and the future of comprehensive care. Participants will gain a better understanding of current treatment options, gene therapy, rebalancing agents, von Willebrand disease research, and the evolving role of Hemophilia Treatment Centers (HTCs).

In addition to exploring medical advances, this session will address the ongoing challenges many patients face in accessing care—including barriers to diagnosis and treatment for women and girls with bleeding disorders, access to specialized care in rural and underserved communities, and the importance of maintaining affordable insurance coverage and access to life-saving therapies.

Whether newly diagnosed or living with a bleeding disorder for years, attendees will leave with the knowledge and confidence needed to become informed partners in their healthcare decisions and advocates for equitable access to comprehensive care.

Session Highlights

  • Emerging Therapies & Treatment Innovations
  • Gene Therapy & Non-Factor Therapies
  • Clinical Trial Updates
  • Individualized Treatment Decisions
  • Annual HTC Visits
  • Regional HTC Priorities
  • Comprehensive Care Across the Lifespan
  • Women’s Health & Bleeding Disorders
  • Improving Access to Care in Rural & Underserved Communities
 
 
Advocacy Track
Why We Still Advocate

New Treatments Have Changed Lives…But Access Still Matters.

Presented by
Adam Alver
Policy Director, Hemophilia Federation of America

Sue Martin, BDASC Executive Director, State Advocacy Lead

James Romano, BDASC Legislative Coordinator

Additional advocacy policy guests

~Panel Guests – Lived Experience

Discussion Topics

  • Why advocacy remains essential
  • What has changed—and what hasn’t
  • Current South Carolina advocacy priorities
  • Federal policy updates
  • Medicaid & Medicare updates
  • Insurance barriers, including prior authorization, copay accumulators, and access challenges
  • Building stronger partnerships among patients, HTCs, HAPs, and advocacy organizations

 

Interactive Advocacy Workshop

Adam Alver
Policy Director, Hemophilia Federation of America

~Panel Guests – Lived Experience

Turning Your Story Into Action

Learn how to transform your personal journey into an effective advocacy message using HFA’s Five Pillars of Public Policy.

Participants will learn how to:

  • Tell a compelling advocacy story
  • Connect personal experiences to policy solutions
  • Identify the policy issue
  • Turn their journey into a message that resonates with legislators
  • Develop a clear and meaningful legislative “ask”
  • Become confident advocates within their communities

 

Passing the Big Stick: Advocacy Across Generations

A facilitated community discussion exploring:

  • Why every generation has a role in advocacy
  • Lessons from experienced advocates
  • Engaging newly diagnosed families
  • Developing future advocacy leaders
  • Strengthening South Carolina’s advocacy movement
Sunday Educational Sessions
Keeping the Momentum Going

Adam Alver
Policy Director, Hemophilia Federation of America

Sue Martin, BDASC Executive Director, State Advocacy Lead

~Panel Guests – Lived Experience

Continuing the Journey Beyond FAMS

Celebrate the accomplishments of the weekend while preparing for the work ahead.

Topics Include

  • Weekend Highlights
  • Advocacy Successes
  • Upcoming Legislative Priorities
  • Advocacy Coalition Opportunities
  • Volunteer Engagement
  • Advocacy Action Dates
Private Infusion Session

(Offered throughout the weekend)

Discussing Self-Infusion, Presented by Robin Jones, MSN, MHA, RN, CPN, CPHON, Midlands HTC Nurse Coordinator with kenny Jones, RN
  • Included: “Tips & Tricks” and Trouble Shooting – what do you do when there is scar tissue? How can we make the veins show up more? Are there tips to make it hurt less? What are all the locations we can use if one place does not work? How many times do you try per infusion if we fail? How do we push past the mental barriers?
  • What are the ways to increase visibility of veins?  Are their exercises that help – ones that young kids or adults could safely do? Do vein finders really work (there is an app now)?
  • Take-away documents filled with tips and tricks. 
  • Port information, and injections. Pros and cons of port vs. peripheral.  Understanding the challenges of each.  Opting for ports in adulthood.
About Beyond Recreation

Beyond Recreation exists to elevate the effects of recreation from that of mere fun to life changing experiences.  We do that by providing intentional, entertaining, and effective staff trainings, camp performances and therapeutic recreation in a variety of settings. Beyond Recreation is dedicated to creating opportunities for deep connection through recreation and leisure opportunities for children and adults. We do that by supporting summer camps and other youth organizations with staff training, by creating and presenting original programming, and by bringing joy and laughter with variety entertainment. Founders Anne Henningfeld, MA, CTRS and Michael Jay Garner, each pulled from their experiences in summer camping and performing to create the Audience Choice Training (ACT) Method. Michael’s acclaimed variety show features juggling, music and surprising tricks with everyday objects. As a Certified Therapeutic Recreation Specialist, Anne addresses a variety of issues for the pediatric population, in group and one-on-one settings, utilizing what children do best: PLAY!

Michael Jay Garner

Michael Jay Garner, Creative Director for Beyond Recreation brings more than 30 years of professional performance experience and nearly two decades of program facilitation to create a cohesive, engaging, and unforgettable program experience. Michael started his performing career like many who pursue this type of work: by accident. He received a BA in Psychology from Emory University, where he also learned how to juggle, play various musical instruments, and find comfort and joy playing on stage as a four-year cast member of the nation’s oldest college improv troupe. After college, Michael worked in the corporate world, but took many side gigs as a performer. And while preparing an audition piece for The Big Apple Circus, he realized that by assembling this random assortment of skills, he had inadvertently been training to be a clown for ten years — without even realizing it. Since then, Michael’s life has been a swirling vortex of clowning and circus arts — from working as a hospital clown with The Big Apple Circus Clown Care Unit, to being the Resident Clown at The Hole In The Wall Gang Camp (a children’s medical camp founded by Paul Newman). He has also toured with Britney Spears on her World Circus Tour and has been touring internationally with Cirque du Soleil since 2016, playing the Handyman clown in KOOZA. Michael is also very proud to work with Cirque du Monde, an outreach program of Cirque du Soleil that teaches circus arts to at-risk and underserved youth. 

Presentors

Dr. “Bobby” Duc Tran, MD, MSc, Chief Medical Officer Hemophilia of Georgia
 
Dr. Tran works at the Comprehensive Bleeding Disorders Clinic and teaches hematology and medical oncology fellows. Dr. Tran received his MD from the University of South Carolina School of Medicine. He completed his residency in Internal Medicine at the University of South Florida and Moffitt Cancer Center in Tampa, where he served as chief resident. He completed his fellowship in Hematology at Winship Cancer Institute of Emory University.

Adam Alver, Policy Director in Policy & Advocacy
 
Adam is an experienced community advocate and political scientist with over 10 years of work across various sectors, including public policy, property management, business administration, and sales. A member of the bleeding disorders community affected by Hemophilia A and a prior inhibitor, he is a former HFA intern, Policy Analyst, and board member of the Hemophilia Foundation of Minnesota/Dakotas.
Driven by an altruistic mindset and a focus on reshaping the current political landscape toward one of empathy and compassion, he is strongly committed to advancing the needs of the bleeding disorders community to ensure safe, affordable, and equitable access to care. Adam believes that by changing perspectives to focus on including long-unrepresented voices, public policy can begin to shift away from historical shortcomings and toward a brighter future for all members of the community. Toward that effort, he is particularly focused on increasing awareness, diagnosis, and treatment of women and people of color with bleeding disorders and recognizing the vital role of modern-day mindsets toward patient care and access to healthcare.

Dr. Richard LemonsDr Richard Lemons, MD, PhD Medical Director and Division Chief, Univ. of Utah

Dr. Richard Lemons is the medical director and division chief and a professor of pediatrics in the division of pediatric hematology / Oncology at the University of Utah. He is also director of the pediatric hematology oncology fellowship program at the university of Utah. Dr Lemons received his medical degree from George Washington University School of Medicine in Washington, DC and completed a fellowship in tumor cell biology at St. Jude Children’s Research Hospital in Memphis, Tennessee. He also has a PhD degree in chemistry from Pennsylvania State University. He is currently a principal investigator for several clinical studies related to pediatric malignancies and pediatric hematology disorders, including gene therapy for hemophilia B.

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