Keeping It Coastal Family Camp 2016 Building One Strong Community Friday: Water Oaks Conference Center 4:00pm: Camper Arrivals, Ocean Creek Registration Office Check-in, Check into Villa s 5:00pm: HSC Registration Check in- Meet and Greet 5:30-7:00pm: Dinner and Moby Dick Exhibits Welcoming-Water Oaks Center Lobby 7:00-7:30pm: HSC s Welcome & Interactive Ice-Breakers, Moby Dick Sponsors Welcome Presentations 8:00pm-11:00pm: Family Fun Night-Games and Social Hour, Movie, Pool Time, Resort Free Time Saturday: Water Oaks Conference Center Exhibiting: 7:30-8:30am, 12:00pm to 1:30pm Lunch Time, 5:30pm-6:30pm 7:00-8:30: Breakfast: sponsored by Shire (Open Exhibits) 8:00am: Chapter Welcome and Agenda Review 9:00am: Education begins for all~ YOUNG ADULTS / ADULTS: Creekside Conference Center I, II, IIl 9:00am-12:00pm, 1:30-3:00pm - (over 18+) Inalex Communications: Creating your Goals and Living Your Vision - Sponsored by Inalex Communications/Shire TEENS AND PARENTS: Water Oaks Conference Center- Section 3 9:00am: Education: Teens & Parents (ages (12)13-18) To Reveal or Conceal: Navigating Disclosure of a Bleeding Disorder Sponsored by NHF: Presenter: Robert Louden, LCSW 10:15am-11:00am: Group Activity Teens and Parents (Video Production Project) Myths of Bleeding Disorders What we want you to know! HSC Logo Painting 11:00am: Beach time- judging of the sand castle contest! 1:30pm: Education: Teens & Parents How Not to Marry Your Mother Sponsored by Aptevo Therapeutics, Presenter: Dezarae Tate, RN
KIDS 7-11 AND PARENTS Water Oaks Section 1 & 2 9:00am: Education: Kids & Parents (ages 7-11) How to Communicate with your Child s School Sponsored by Novo Nordisk Presenter: Sue Geraghty, RN Kids Education-Sponsored by CVS Caremark- How Blood Vessels Clot (pool noodles) & HSC Activity (may split up ages- 7-9 and 10-11) 10:30am-12:00: Group Activity Kids and Parents - Family Sand Castle Contest - Beachfront 1:30pm: Education: Kids & Parents Together- Are You Smarter Than A 5 th Grader Sponsored by HFA- Presenter: Ann LeWalk, MA, LLPC TOTS 0-6 AND PARENTS Creekside Conference Center Library 9:00am: Education: Tots & Parents (0-6) No Sweat- Stay Active Sponsored by Shire- Presenter: Nancy Roy, RN Kids Activity- HSC 10:30am-12:00: Group Activity Tots and Parents- Eye Spy on the Way to the Beach & Family Sand Castle Contest 1:30pm: Education: Tots & Parents (0-6) There s No Place Like Home Sponsored by HFA Presenter: Sue Geraghty, RN Kids Education-Sponsored by CVS Caremark-Yoga for Children with Animals, Joint Puppet Education 12:00-1:30pm: Lunch and Exhibits Water Oaks Conference Center; Lobby 3:00pm: Group Picture and Family Free Time 5:00pm: Dinner Program, HSC Updates and Announcements 5:00pm- 6:30pm: Dinner Buffet- Water Oaks Conference Center (Exhibits open last time) 7:00pm: Remembrance Celebration- Poem & Name Reading Saturday Evening Activitie for all: Water Oaks Conference Center 7:30pm-11:30pm: Family Fun Karaoke, Disney Trivia, Dancing and Snacks Sponsored by: Myrtle Beach DJ s Joe Durivage
Sunday: Water Oaks Conference Center 7:00am: Sunrise self-guided beach walk with HSC members and CSL Behring Meet in front of the lobby of the Water Oaks Center if interested in joining in! 8:00-9:30am: Breakfast 8:30-9:00am: Breakfast Presentation: Gettin in the Game of Fitness and Life Sponsored by CSL Behring 9:00-10:00am: HSC s Turkey Trot Walk Kick Off- Program Overview (sign-ups) 10:15-11:30am: For our VWD Members- NEW: Understanding von Willebrand Disease Sponsored by Shire-Presenter: Nancy Roy- RN Creekside Conference Center 1, II & III 10:15-11:30am: Round Table Breakout Sharing Sessions: Da Boy z: Men and Boy s Program, CARE: Ladies and Girls Program, YES: Young Families Empowerment & Support Water Oaks Conference Center Young Adults Programming/Video-Library 12:00pm: Lunch Box on the Run- Exhibit Hall Lobby- Lunch Sponsored by CSL Behring 12:00am-2:30pm: Family Fitness Day at the pool/beach/volleyball courts Rest of the day is free to play and enjoy until 2:00pm - Checkout - Travel safe and thanks for coming! With Appreciation to our Sponsors for this year s Family Camp Weekend Special Thanks to the National Hemophilia Foundation, Hemophilia Federation of America, Colburn Keenan Foundation and Inalex Communications!
Educational Program Overviews: Creating Your Goals and Living Your Vision In a supportive community environment, those in the bleeding disorder community will learn practical tools and techniques in setting powerful, inspiring and achievable goals. Whether it s used to better manage your bleeding disorder, your health, career, or your life, attendees will identify things they are tolerating, and then identify action steps to clear the roadblocks of life by examining their underlying concerns and fears that blocks them from taking action. Participants will then identify and develop their own breakthrough goals to begin improving their lives! Additionally the workshop will explore the development of strategic action plans and identify the individual and community support needed to move people from wishful thinking into direct and effective powerful action! Presenter: James Stroker is an educator and sports coach who has spent over 30 years in the New Jersey Public School System as a wellness educator. His wellness program has been cited as one of the nation s best; Mr. Stroker and his colleagues were named teachers of the year in 2011 and Coach Stroker was recently inducted into the New Jersey Coach Hall of Fame. He is a certified Vinyasa instructor, holding certification in Reiki 1 and 2 and is a Fascial Stretch Therapist. He teaches both core training and yoga through the Island Wellness Center in the Long Beach Island and is the creator of "Inspirational Hotline", a morning message delivered to 700 students. He has brought his inspirational yoga practice and motivational techniques to a number of varying of facilities, including Cancer Centers, Residential Juvenile Centers, Male and Female Correction Facilities, and Substance Rehabilitation Centers. Jim is proud father of three remarkable children. Are You Smarter Than a 5 th Grader? Can you pass the test? Kids and adults alike can learn basic bleeding disorders information in this interactive game. Competition and fun game interaction for parents and kids. Presenter: Ann B. LeWalk, MA, LLPC is the Director of Development at HFA. Ann's work involves nurturing relationships with current funders, seeking new funding streams to extend HFA s capacity, and promoting HFA programs. She began her career in bleeding disorders 18 years ago at the Hemophilia Foundation of Michigan, where she held leadership positions in youth programs, advocacy, and development. Ann holds a B.A. from the University of Michigan and an M.A. in Counseling from Wayne State University in Detroit. Ann lives with her husband and two teenage children in Redford, Michigan. There s No Place Like Home This session empowers parents and their children to take control of their bleeding disorders by understanding the basics of home infusion and the benefits of learning how to infuse. Share your experience with fellow participants. Presenter: Ms. Sue Geraghty, RN has an Associate of Arts degree in nursing from Lander College in 1977, a Bachelor of Science degree in Nursing in 1980 from University of North Carolina at Charlotte and a Master s in Business (MBA) from University of Colorado Denver in 1990. She has 39 years of experience as an RN, most of those spent in orthopaedics and bleeding disorders. She worked as Nurse Coordinator at the University of Colorado Denver Hemophilia and Thrombosis Center for 25 years where she retired in2013. Currently she is working as an independent consultant in the areas of hemophilia and health care education. She is certified as an Orthopaedic Nurse Clinician through the National Association of Orthopaedic Nurses where she is still an active member. During her time as nurse coordinator at the Hemophilia Treatment Center she has sat on a number of national committees including the Nursing working Group for the National Hemophilia Foundation and the UDC Working Group for the CDC. She has spoken locally, nationally and internationally and has been published in many peer reviewed journals. Her areas of interest within the hemophilia community include the adult patient with bleeding disorders, patients with inhibitors and orthopaedic issues.
To Reveal or Conceal: Navigating Disclosure of a Bleeding Disorder Deciding when and how to talk about a bleeding disorder can be challenging, but it is an important part of life for people with bleeding disorders and caregivers. This session explores ways to communicate about bleeding disorders in real-life situations. Topics covered may include social situations, dating and relationships, employment, disclosure to family, and social media. Presenter: Presenter: Robert Louden, LCSW Robert Louden is a licensed clinical social worker (LCSW) and has been working at the Indiana Hemophilia & Thrombosis Center, Inc. (IHTC) in Indianapolis, Indiana since 2014. He has been working as a social worker since 2000 and received his Masters of Social Work in 2007 from Indiana University. Mr. Louden has experience working with both individuals and families, with a broad range of medical diagnoses, with an emphasis on the chronically ill, and those suffering from addictions and mental health issues. In his role at the IHTC, Mr. Louden assesses psychosocial needs and develops a plan of care in conjunction with the multi-disciplinary team for patients with bleeding disorders and other diagnoses, and their families. He applies and maintains a working knowledge of theories and treatments used to treat pediatric and adult chronically ill patients who experience mental health and/or substance abuse including crisis intervention and brief, solution-focused therapy. Mr. Louden also provides assistance with coordination of resources at the local and national levels as well as health insurance issues and concerns. No Sweat- Stay Active and Healthy with a Bleeding Disorder It s possible for people wish bleeding disorders to enjoy the benefits of physical activity. This session discusses the benefits of sports and exercise, how to choose and prepare for an activity that s right for you, and how to incorporate activities into daily life. Nancy Roy, MSN, FNP has been active in the hemophilia community for over 29 years and was the nurse coordinator at the Maine Hemophilia Treatment Center in Portland, ME, then at the Palmetto Health Hemophilia Treatment Center in Columbia, SC. She has extensive experience in all aspects of bleeding disorders care, including rare disorders and hemophilia inhibitors, serving both pediatric and adult individuals and families. Nancy now serves as a Senior Clinical Specialist for Shire, Inc. Understanding von Willebrand Disease Did you know that von Willebrand Disease is the most common inherited bleeding disorder? This session provides an educational format to discuss symptoms, types of vwd, recognize potential treatment options, and learn how emotional and community support systems can help those living with a bleeding disorder. Nancy Roy, MSN, FNP (See Above) How Not to Marry your Mother If you have hemophilia or a bleeding disorder, is factor all it takes to cut the apron strings? Come and gauge your independence readiness. This interactive session will provide you with resources and self-management tools to help you with self-sufficiency and increase confidence.
Presenter: Dezarae Tate, RN Dezarae Tate is the Hemophilia Nurse Coordinator at the South Texas Hemophilia Treatment Center at The University of Texas Health Science Center in San Antonio Texas. She has held that role for the last 7 years, providing care to pediatric and adult patients in South Texas. She has also been involved in the Texas Hemophilia Community as the Nurse Medical Director for Hemophilia Camps for the last 4 years and works with the local chapter to provide community outreach and education from Austin down to Harlingen. How to Communicate with your Child s School Learning how to discuss your child s needs in school and how to communicate with the school teachers and staff. Presenter: Ms. Sue Geraghty, RN (See Above) CSL Behring s Gettin in the Game Common Factors Program This program provides patient-support with educational information and guidance to members in the Bleeding Disorder Community. Hear from community members as they tell their story and how they handle sports and bleeding disorders. Common Factors Presenter: Suzanne Nash Children s Education Support: Ana Elena Garcia RN, BSN-Manager Clinical Hemophilia Advisors /CVS Specialty Ana has been a nurse for over 30 years, having worked in the hospital setting and as a home care/infusion nurse for 16 years. She has worked with the Hemophilia Community for 16 years and is currently the Manager of the Clinical Hemophilia Advisors at CVS Specialty which is a team of clinicians that provide educational support for the Hemophilia Community. Saturday Night Entertainment: Sponsored by: Celebrating their 10th Year Anniversary, the Board of Directors wish to provide you a wonderful family fun-time experience. Enjoy the sounds of Myrtle Beach DJs, with Joe Durivage and enjoy Karaoke, Disney Trivia, Dancing and Snacks. Exhibitors Hours: Friday: (5:30-7:00pm Moby Dick Only) Saturday 7:30-8:30am, 12:00-1:30pm, 5:30-6:30pm