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2020 Virtual Educational Family Camp & Adult Retreat

“Keeping It Coastal” 

September 25th through October 3rd

We are excited to welcome you to come spend time together virtually with friends and community members throughout South Carolina for our Annual Educational Family Camp Weekend and Adult Retreat. We are working hard to provide the same weekend experience we have all come to love in a virtual setting, spread out over a week, allowing many opportunities for connecting. We will be having event sessions for families and adults, caregivers & couples, advocates,  individuals affected by VWD, and kids! Enjoy a virtual experience in a box and through your computer, Ipads, tablets, or phone. While it’s not the same as being together in person, we invite you to enjoy a wonderful time connecting with community members until we are together again. Please register to join us. “See you soon” !

Pre-Register here!-Closed

Pre-Registration Deadline Date: September 11, 2020 (to receive the family camp in a box enhancements and goodies)

Once you pre-register, watch for your “Beach in a Box” to arrive at your home. Next, you will be asked to scroll down this page and register again for each session you are planning to attend. The zoom link will be sent to your email. Then on the session date, you will log into the conference and enjoy!

Family Camp Invite and Registration Information

ZOOM Privacy Policy and Disclaimer: As with all HSC meetings, your personal information is secured only with the chapter. No personal information gathered or used by HSC during the event will be shared with outside parties or vendors. HSC will endeavor to ensure that all online meetings are safe and secure to the best of our abilities. Chat logs, location data, activity data, video and audio, and other available information within the ZOOM Meeting platforms may be archived to ensure the safety of our participates. We will also control audio and video settings of meetings, sessions, and other communications on our systems for safety, your privacy, and ease of use.  By registering for the virtual event, you agree to our photo and events waiver and Zoom policies and disclaimer release. 

Schedule of Events:

Friday, September 25th – 6:30pm – Opening Night Welcome Session

Bombardier Blood

Register here!

Join the Chapter and your community for pizza, popcorn, camp kahoot trivia, sponsors welcomes,  and a showing of Bombardier Blood – 7:30pm Viewing. The viewing will be done on our Zoom platform.

Order pizza to hang out with your family and friends while viewing this wonderful documentary with our community and receive reimbursement for your pizza upon receipts being sent to the chapter. Up to $40.00 per household will be reimbursed. Then, join us throughout the week for our many sessions for everyone!

About BOMBARDIER BLOOD

Chris Bombardier has never let severe hemophilia stop him from climbing some of the world’s tallest mountains. In 2017, Chris partnered with hemophiliac filmmaker Patrick James Lynch and his award-winning production team at Believe Limited to film his journey through Nepal to summit the world’s tallest peak, Mount Everest.

In his home state of Colorado, filming captured Chris’s training, interviews with Chris, his wife and family, and his hemophilia clinicians. In Nepal, production followed Chris to meetings with Nepalese hemophilia advocates and clinicians as well as to the homes of patients and families affected by the disease, where Chris heard the emotional stories of pain, suffering, and loss related to hemophilia. Production remained with Chris during his two months on Everest, capturing the physical, psychological, and emotional struggle of acclimating to the mountain and preparing for the greatest challenge of his life, all with the eyes of the global hemophilia community watching.

Leveraging powerful archival footage, the film also chronicles Chris’s incredible six-year journey of climbing the Seven Summits, the highest mountain on each continent, during which he receives his “wake-up call” about hemophilia in developing countries and begins his activist mission.

In Nepal, as in nearly all developing nations, there is no routine access to healthcare and lifesaving medicine for people suffering from hemophilia. Bombardier Blood is an inspiring and heart-warming adventure film that cinematically highlights both what is and is not possible when living with this rare disease, depending on a patient’s access to medicine and care.

Saturday, September 26th – 10am – 2pm – Advocacy Action Workshop 

Join HSC for its Keeping it Coastal advocacy session. We’ll be having an informative training session, hear from SC Legislator Jason Elliott (SCHR-22) and others during our Town Hall meeting while discussing our concerns of the co-pay accumulator adjuster programs implemented in insurance plans and what the up coming legislative session will look like. Learn the ins and outs of insurance lingo and acronyms (co-pay, deductible, new words for 2021), understand our state resources, and hear some national updates. Most importantly, we’ll be preparing for our 2021 (possible virtual) legislative session and how WE can represent the Bleeding Disorders Community of South Carolina assuring access to care and treatment. This session is available to all members of HSC, our Coalition members and our Ambassadors!

Get involved in advocacy and YOU can make a difference for us all!

Register Here!

View Agenda

 

Tuesday, September 29th – 7:00 pm – Adult Retreat Session : “Planning Your Future”, Sponsored by Pfizer

Join us for an overview of the potential ways adults with bleeding disorders can plan for their financial futures. Emphasis is on defining retirement goals and identifying future needs, aspects of long-term care, and the benefits of a support network. Then, join the conversations with our special guest, Kyla Capers from the South Carolina Department of Consumer Affairs who will further discuss financial literacy covering saving and investing while planning your future.

Register Here!

Informational Flyer

Financial Planning for the Future Slides

Ditch The Pitch Manual

Thursday, October 1st – 6:30 pm – VWD Education and Support: OBGYN Plus, Sponsored by Octapharma

Learning more about VWD is important, so we have invited our guests in VWD education to join us for conversations about this complicated disease. Help HSC and the VWD community as we participate in our global call to action to raise awareness and education about VWD. Learn about OBGYN education with VWD and share your knowledge with your participation! AND… enjoy a little fall holiday fun art project in the company of your VWD friends! (Hint: Burlap and Ribbons, You must pre-register for the conference (above) before September 11th to receive supplies)

Our Guest Speaker:

Speaker: Dr. Amber Federizo, APRN, FNP-BC

Nurse Practitioner Hemostasis and Family Board Certified

Hemostasis and Thrombosis Center of Nevada

Register Here!

Friday, October 2nd – 7:00pm – Couples & Caregivers Night Out: “Indulge” Sponsored by Genentech

COVID fatigue, homeschooling fatigue, media fatigue, caregiver fatigue, lists about fatigue, we hear you. Join us for ” A Night out for Couples and Caregivers. Enjoy a special viewing of the first episode of the YouTube series CHALLENGED ACCEPTED! CHALLENGE ACCEPTED is a series, created by Genentech, inspired by and made for the hemophilia community. Two boys with hemophilia A challenge host Justin Willman to take their parents out for the best date night ever. Guest starring Chef Graham Elliot. This episode talks about keeping relationships strong when raising children with bleeding disorders and taking care of oneself. Following the show we’ll be having a discussion together on self-care and ways to infuse some relaxation back into your life. This session is for caregivers too!  (Pre-register for the conference (above) before September 11th to receive some indulging enhancements supplies)

Register Here!

Saturday, October 3rd – Kids Day, Family Sessions, Mental Health, Blood Brothers & Closing Retreat Sessions

Register Here! 

(you will only need one login meeting ID and password for the entire day. Just login as ofter as you like throughout the day to attend different sessions)

10:00am – Chapter Coffee Hour!

After a long week of fun, support, and education, bring your coffee or favorite morning beverage and let’s hang out for some casual conversations. Share your support and knowledge with community members just like we did at camp last year in person! Learn about the “Turkey Trot Walk / Run” and join the fun. Help us reach out goal.

 

10:30am – Parents and Kids:  A visit with the South Carolina Aquarium – “Critter Calls Ocean Tour”  ~ Sharks, Stingrays, and more!

Before we have a tour with the SC Aquarium, kids will share their favorite beach toys, pets, stuffed animals, and beach stories with their friends from our community, building bonds for their futures. (Critter Calls Ocean Tour begins at 11:00am sharp) Following this session, parents will enjoy sharing conversations with discussions on going back to school, what you are discovering, and what you should know about children in school with bleeding disorders.

 

1:30pm  – Building Connections:  Seeking Support in a Time of Social Distance, Sponsored by Takeda

The worldwide pandemic has created unforeseen challenges for our health and well-being.  Learn how to manage a bleeding disorder amidst shelter-in-place and social distancing mandates while building and maintaining supportive relationships.

Informational Invitation

 

4:00pm –  Let’s Talk Mental Health with Patrick James Lynch, Sponsored By Sanofi Genzyme

Join Patrick James Lynch and Believe Limited, and the team behind Bombardier Blood, as we premier their new documentary about mental health in the bleeding disorders community. Let’s Talk is an immersive journey through the lives of five members of the U.S. bleeding disorders community, as they open their hearts and lives to show how we can gain strength through struggle, and that perhaps we aren’t so different after all. Produced in partnership with Mental Health Matters Too, the film is intended to spark conversation, increase awareness, and decrease stigma. Information to their website is intended to provide easy-to-use links, resources, and tools for connection, screening, and receiving support. You don’t want to miss this session!

View Informational Flyer Here!    Content and Speakers

View Support Materials Here!   Mental Health Matters Too –  Resource Guide for the Bleeding Disorders Community

 

7:00pm – Closing Event– HSC Family Bingo Night,  Turning the Stumbling Blocks into Stepping Stones with Perry Parker, Sponsored by CSL Behring

After a wonderful week of educational and supportive information, join us for the final night at camp and experience the joy of gathering together, talking with other community members while breaking out into groups and sharing some helpful hits and knowledge with each other. Thank our sponsors and hear from Perry Parker, CSL Behring’s Community Advocate and professional PGA Golfer who lives with hemophilia and shares his life stories promoting sports, exercise, and healthy lifestyles. Finish the night with us in a family fun game of “BINGO” ZOOM Style! Win prizes just for playing and attending. We are going to have a blast!

Download Extra Bingo Cards and Print Here!

Learn more about our speaker, Perry Parker! 

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Save the Date! We will return to the Marina Inn on September 24-26, 2021

 

Marina Inn at Grande Dunes

8121 Amalfi Place, Myrtle Beach, SC.

This annual recreational and educational event is available to individuals and families who either have a bleeding disorder, are carriers of a bleeding disorder, or have an immediate family member living in the same household diagnosed with a bleeding disorder. Our Family Camp and Adult Retreat is held in the Lowcountry over a three-day weekend and provides education and support to our community members who live in this region, while also providing all members a coastal venue experience.

What is the Family Camp – Adult Retreat?

The Family Camp and Adult Retreat provides community members with an extended opportunity to connect with others who are experiencing the same journeys while living with a bleeding disorder. Participants learn that they experience similar situations living with bleeding disorders, yet in different ways. For children and teens, they connect in a way that is unique to them; knowing they are not the only one with a bleeding disorder, and for a brief time, they can connect and forget what brings them to camp. They are among friends who just “get it”. Oftentimes, they make lifetime friendships. For the older adults, it is a special time to reconnect and find support in sharing their experiences and providing comfort to one another in friendship. Families leave with a renewed feeling of community and empowerment knowing they are not alone.

What do you get out of it?

We provided educational opportunities, empowerment, group activities, and supportive family fun connections with members of the South Carolina bleeding disorders community. Family Camp is attended by approximately 225 members and supportive affiliates; such as, guest speakers, national organizations, and healthcare / Industry representatives who are affiliated with the bleeding disorders community. Educational exhibit hall opportunities are offered for participants throughout the weekend to provide informational materials and one-on-one conversation opportunities on the most updated treatment therapies and support services.

Family Camp Photo BoothCome Join Us!

 

 

 

 

 

The weekend is free of charge with a small reservation deposit. All meals, lodging, and activities are included. Space is limited and registration with HSC is required. Notification will be sent once an application is accepted.  Applications are accepted on a first come / first serve basis, and a need-based weighted selection process will be implemented if we cannot accommodate all eligible applications. Register to join us and “Keep it Coastal”.

The Moby Dick Sponsors

Genetech LogoPfizer LogoCSLBehring LogoOctaPharma


The Great White Shark Sponsors

TakedaDiplomat LogoAccredo LogoSanofi GenzymeBayerCVS Logo


Educational Sponsors

CK-Colburn-Keenan-Foundation-Logo