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          Educational Family Camps and Medical Symposiums
 
2024 Annual Fall Family Advocacy Camp & Medical Symposium

We are excited to invite the South Carolina members of the bleeding disorders community to join us for our statewide educational and community connections, Annual Family Advocacy Camp. We are hosting family camp this year in our host hotel as we wait for our 2025 camp venue. We will enjoy a family camp theme with activities and educational sessions for everyone. Our Medical Symposium track will host our Industry Forum during our morning breakout sessions with companies of your choice to choose from to discover and learn about their product pipelines and any new innovative treatment options available to treat bleeding disorders. Sessions begin promptly at 10am.

We will also take an overarching quick look at the current landscape of healthcare access to treatment care for those living with bleeding disorders in South Carolina, including resource information when access barriers become a reality. We will discuss together; how we can move forward with women’s diagnosis and treatment care, serve our platelet and rare bleeding disorders community, and advance VWD treatment and diagnosis. We will hear updates within our treatment centers and health agencies with information important to those living with bleeding disorders.

Discover how members of the bleeding disorders community can become great stewards in their own health care needs. How can we together advance patient-centered affordable treatment care and shared decision making to drive positive healthcare outcomes and reduce our healthcare costs? Listen to the stories of those with lived- experience within the rare disease community and how they navigate barriers with access to care. Learn to advocate and share your voices for change in policies that affect this community. The Fall Family Advocacy Camp will look at health care today and help us prepare for the future. We are working to have host of local and national speakers well versed with information and we are grateful to all who are helping to make this another fantastic educational and supportive weekend for everyone.

Hotel accommodations will only be provided to those who plan to attend all educational sessions and activities on Saturday, Saturday evening, and Sunday morning. Members may still enjoy the educational day sessions and connections on Saturday without the hotel accommodations.

Members may also register for the Pathfinders Hike separate from Family Camp on Sunday. Registration is still required to attend.

Family Camp Highlights Include:

Product & Services Updates, Advocacy Training and Awareness, Teen and Children Transitioning, Family Connections Activities, and Community Empowerment!

Wellness and Health Track: We are delighted to host the newest national bleeding disorders program during our Family Advocacy Camp provided by GutMonkey- Pathfinders! We will discover the beauty of the outdoors while forging lasting connections with others who understand the journey.

  • Become one with Empowering Nature Walks surrounded by the calming presence of nature.
  • Discover Educational Insights: Learn to manage bleeding disorders in the great outdoors.
  • Supportive Community Connection: connect with others in the community, fostering a sense of camaraderie and understanding; share experiences, stories, and triumphs – discover you are not alone.
  • Advocacy Awareness; raise awareness for positive change for access to resources for bleeding disorders
  • Celebrate Resilience by commemorating the resilience of this community and the inspiring moments of this event

The great outdoors is for everyone. For individuals and families, Pathfinders events are specially crafted to bring together folks affected by all bleeding disorders. We invite families and folks from all walks of life to discover the beauty of the outdoors while forging lasting connections with others who understand the journey.

Our Sunday Morning Pathfinder Group Activity Location: 

Harbison State Forest

5600 Broad River Rd, Columbia, SC 29212

Sunday, October 20th

Agenda Details: GutMonkey- Pathfinders

7:00am: Hotel Breakfast

9:00am: Hotel Check Out – Pathfinders Group Activities 

9:30am: To Pathfinders Walking Trails (Environmental Educational Center)

10:00am: Learning Trail Hike Start

12:00pm: Group Box Lunches & Good-Byes

Pathfinders is sponsored by Sanofi

October 19-20, 2024

SATURDAY: 8:30 AM 
SUNDAY: 12:00 PM 
Embassy Suites by Hilton Greystone 
200 Stoneridge Dr., Columbia, SC 29210

Registration closes- September 26th or when all rooms are received. Space is limited, register today!

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. Our Teen and Children’s programs will be hosted by our Child Life Specialist, Erin Van Nostrand, staff and board members, and our volunteers.

  • Engage in Support Group Roundtables “Community Talks” Conversations
  • Learn within our Infusion Clinics 

 

Sessions will run concurrently during our adult sessions on Saturday from 11:45 – 12:45pm & 2:00 – 3:30pm.

Tean Group Activity:

7:00pm – Teens to Escapology

Teens will enjoy a special team building group activity at Escapology of Columbia (Escape Room) on Saturday night.

717 Lady Street, Suite D, Columbia 29201

7:30pm -Teen Building Group Activity – Discover together as teams how to solve the mysteries of:

The Lost City: Can you find the treasure and escape the temple before it’s too late? Do you have what it takes to escape?

Budapest Express: A moving train. A killer with their sights on you as their next victim. Can you find them… before they find you?

Who Stole Mona: Uncover the mastermind behind the world’s biggest art hist. Do you have what it takes to return the priceless Mona Lisa to its rightful home?

Under Pressure: Stuck at the bottom of the ocean, you need to act quickly to get the stricken submarine back to the surface before the oxygen runs out and the immense pressure crushes the hull!

Parents will have the time for group connections and conversations in our meeting space at Escapology as your teens learn to work together to solve the mysteries and escape. Watch them live solve the mysteries on the TVs.

Saturday night highlight:

Families, children, and anyone who is willing to join in, will enjoy a family fun Saturday night of BDASC’s Got Talent Karaoke Show. Bring your best and show off your skills! All in family fun style.

Sunday Group Activity for Families with Young Children

For our families with young children, or Family Camp participants who feel they are not comfortable in participating physically with the Pathfinders activity on Sunday will be provided with tickets to enjoy a Sunday morning visit at the Riverbanks Zoo and Garden.

500 Wildlife Parkway, Columbia,  29210 

NOTE: Attendees must have participated in all activities and educational sessions on Saturday to receive this opportunity.

                                               Meet our Special Guest & Speakers!
Nathan Schaefer, Senior Vice President of Public Policy & Access, NBDF. Nathan is a Senior Nonprofit Executive with 20 years of progressive leadership experience, overseeing political advocacy organizations in supporting Bleeding disorders (i.e. education, advocacy, research, prevention), LGBTQ, and HIV-affected communities. across the State of New York and Metropolitan Washington, D.C. geographic areas. Skilled Public Policy leader providing strategic planning and direction on executing nonprofit vision, mission, and objectives, advocating the nonprofit’s brand messaging and strategic communication goals.
James Romano, Care and Cure Partners, CEO & President and BDASC Legislative Coordinator James is the founder of Care & Cure Partners. Care & Cure Partners works to advance the advocacy, nonprofit, fundraising and government relations needs of our clients. James has over 25 years’ experience working with nonprofit organizations in a government relations and advocacy capacity. Throughout his eventful career, James has worked for a Member of Congress, nonprofit organizations and a Washington, DC lobbying firm. James brings this experience to the benefit of the Care & Cure Partners clients.
SC Representative Seth Rose, (D) Richland District #72. Seth Rose, an American lawyer and public servant, has seamlessly intertwined his passion for justice, community service, and leadership, creating a legacy that resonates far beyond his extensive legal and political career. Prior to his legal and political career, Rose was a First Team All-America singles tennis player for the University of South Carolina. In his college career Rose twice defeated the number one ranked NCAA singles player in the nation and advanced to the Round of 16 in the 2003 Div. I NCAA Men's Singles Championships held in Athens, Georgia. He was inducted into the Gamecock Athletic Hall of Fame in 2014.
Bloom Davis - GutMonkey Facilitator. Bloom is dedicated to fostering a compassionate world through collective action and meaningful connections. With a liberation-centered approach, Bloom harnesses the power of play, community, and nature to inspire change. An avid long-distance backpacker and wilderness guide, Bloom has hiked the Pacific Crest and John Muir Trails, and thrives on helping others build skills and align their practices with integrity. As an educator and facilitator, Bloom knows how listening and understanding helps build resilient communities. Bloom is also a writer who explores themes of transformation, accessibility, and adventure.
Chad Richardson, PharmD, is a Field Medical Director with Pfizer Pharmaceuticals in the Rare Hematology division of US Medical Affairs, where he focuses on hemophilia. Before joining Pfizer, Chad practiced as a Solid Organ Transplant Clinical Pharmacist for over 12 years where he managed complex medication regimens and provided education to patients and their caregivers. Chad has over a decade of teaching experience including lecturing for multiple universities and speaking at scientific conferences. Chad joined Pfizer in 2022, bringing his clinical experience and passion for patient and provider education to the role.
                                   With gratitude we thank our 2024 Sponsors!
Thank you to our State Based Advocacy Grant Sponsor
Thank you to our year-round Diamond Advocacy Sponsor
Thank you to our Premier Sponsor!
Thank you to our Premier Sponsor!
Thank you to our Premier Sponsor!
Thank you to our Premier Sponsor!
Thank you to our Platinum Sponsor!
Thank you to our Platinum Sponsor!
Thank you to our Platinum Sponsor!
Thank you to our Platinum Sponsor!