45 th Annual Meeting and HELLO Conference Helping Embrace Life s Learning Opportunities

Transcription

1 45 th Annual Meeting and HELLO Conference Helping Embrace Life s Learning Opportunities June 1-2, 2018 Greenville, South Carolina Empowerment through Knowledge and Connections

2 Friday Night Agenda 4:00pm- Chapter Check-in- Name tags, folders, registration- Pre-Function Hallway 5:00pm- Ice Breaker and Social Gathering- Never, Have I Ever with HFA and Sarah Shinkman- Doral Ballroom 6:00pm- Chapter Welcome & Opening Remarks 6:30pm- Dinner & Keynote Presentation- Patrick James Lynch: Powering Through Challenges; Empowering Through Content 7:30pm- HSC Mission Moments 7:45pm- HSC Awards Ceremony Program Presenting of the Academic Scholarship Awards (please read about the recipients in the program content section) Samantha Nash MaRee Johnson Dillon Snead Michael Keith, Jr. Christopher Shumard Tamir Walker Tariq Walker Presenting the HSC Annual Meeting Awards Appreciation and Partnership Award Making a Difference Award Volunteer of the Year Award Board Member of the Year Award The Aaron Gossett Inaugural Pillar of Strength Award Saturday Educational Agenda Corporate Kids Events Childcare, ages :30am - 4:00pm- Palmetto Club Ballroom Provided by Corporate Kids, Events Education Activities 10:00-10:30am- Meet George and His Port Infusions Ages 3-7, with Mercedes Ruiz Castaneda, Provided by CVS Specialty 2:00-3:00pm -- Junior Scientist Ages 8-12, Provided by Karing for Kids- with Accredo Teen Programming- Spartanburg / Florence 9:00-10:30am- Stop the Bleeding Workshop with Patrick James Lynch, Provided by Shire 10:30-11:00am- Snack Break with Parents 11:00-12:00pm- Finding Your Place In the Sports World with Sarah Shinkman, Provided by HFA 1:30-4:00pm: Finding Your Artistry with Wood- Provided by HSC and Novo Nordisk, Burlap and Ribbons

3 Exhibiting- Doral Ballroom 8:00am-9:00am- Premier Sponsors Only 10:30am-11:00am * 12:00pm-1:30pm * 4:00pm-5:00pm Saturday AM Sessions 9:00am-12:00pm - Greenbrier / Kings Mill / Harbor Town 8:00am-8:55am- Premier Sponsorship Exhibiting- Doral Ballroom 9:00am-9:30am- Opening Remarks & Premier Sponsors Presentations 9:30am-10:30am- What s New in Gene Therapy, Product Development and Research Studies Possibilities in South Carolina with Dr. John Lazarchick 10:30am-11:00am- Quick Snack Break and Open Exhibits- Doral Ballroom 11:00am-12:00pm- Winning with a Bleeding Disorder: Tools and Tip for Parenting Children with Health Issues with Lisa G., MA, CFLE, Provided by CSL Behring 12:00pm-1:30pm- Lunch Exhibiting / Hotel Check-Out- Atrium Promenade Breakouts- Saturday PM Sessions 1:30-4:00pm 1:30pm-2:30pm Nutrition: Medication, Herbs & Supplements that Increase Bleeding with Mercedes Ruiz Castaneda, Provided by CVS Specialty- Greenbrier / Kings Mill / Harbor Town VWD and Me, Q & A - with Sue Geraghty, Provided by NHF- Columbia Room Step It Up, Living a Healthy Lifestyle with Bleeding Disorders with Linda Pollhammer, Provided by Pfizer- Charleston Room Quick Break: minutes- Exhibits Open- Harbor Town / King s Mill / Greenbrier Ballroom 3:00pm-4:00pm Tell Me Where It Hurts; Pain, Depression and Anxiety with Georgia Panopoulos, Provided by NHF- Harbor Town / King s Mill / Greenbrier Ballroom The Journey of Factor: A Deeper Dive with April Littrell, Provided by Shire- Columbia Room Tackling Transitions: From Tots to Teens and Beyond moderated by Sarah Shinkman from HFA with Community Members; Sue Martin, Connie Graham, Larry Glenn, Jr., Lovee Johnson-Lundy- Charleston Room 4:00pm- Prompt Pick up kids in Childcare / Gather your teens please 4:00pm-5:00pm- Exhibits- last call 4:15pm-5:15pm- Infusion Clinic- with Robin Jones, HTC and Provided by Bayer- Charleston Room 5:30pm-7:00pm- Chapter Buffet Dinner: Closing Programming Events: Sponsored by Bayer Thank you for joining us, we enjoyed having you! Travel home safely. Hemophilia of South Carolina

4 2018 HELLO Program Sessions Powering Through Challenges; Empowerment Through Content Patrick James Lynch PATRICK JAMES LYNCH is an award-winning actor, director, producer, and host living with severe hemophilia A. As the CEO of the digital content agency Believe Limited, Patrick is responsible for the community programs such as Powering Through, Stop The Bleeding!, The BloodStream Podcast, and The Teen Impact Awards. Patrick is also the director of Bombardier Blood [2018], a feature-length documentary following hemophiliac mountaineer Chris Bombardier s historic summit Mount Everest. Patrick has been recognized with the HFA s Health & Wellness Award [2013], NHF s Meritorious Achievement Award [2014], and was a featured plenary speaker for WFH s World Congress [2016]. See his work at What s New in Gene Therapy for Both A and B Hemophilia, New Product Development and Research Studies Learn about what is available for the South Carolina bleeding disorders community at MUSC from the research doctors who are participating in many clinical trials. John Lazarchick, M.D. Professor Vice Chair, Laboratory Medicine Director, Hematology and Hematopathology Fellowship Program Department of Pathology & Laboratory Medicine CLINICAL EXPERTISE: Coagulation Inhibitors, Fibronectin, Platelet Antibodies EDUCATION: B.A., 1964, Lafayette College, Easton, Pennsylvania M.D., 1968, Thomas Jefferson University, Philadelphia, Pennsylvania Internship: , Los Angeles County USC Medical Center Medical Residency: , Mayo Clinic, Rochester, Minnesota Hematology Fellowship: , Massachusetts General Hospital Harvard Medical School National Hemophilia Foundation Research Fellowship: , University of Connecticut Health Center

5 Winning with a Bleeding Disorder: Tools and Tips for Parenting Children with Health Issues Provided by Every parent dreams of raising respectful, responsible kids who make wise decisions. And when a child has a medical condition, responsibility also means medical adherence. You ll learn practical and proven tools for raising confident, responsible kids with high coping skills, kids who are optimistic about life and take good care of themselves even when no one else is watching. Parents will walk away with a lighter step and immediately applicable, practical, and highly effective parenting tools. Lisa s message is, You can do it! Lisa C. Greene, BS CCP Lisa Greene is a well-recognized public speaker addressing parent groups, hospitals, schools, medical and mental health groups, as well as non-profit organizations. Her experiences in parenting two children with cystic fibrosis along with her extensive experience as a parenting educator and coach have deemed her an important motivational speaker. Lisa has also co-authored an award-winning book titled Parenting Children with Health Issues and continues to write and create resources for parents and professionals. VWD and Me: Q&A As a person with or a caretaker of someone with VWD, you may have many questions, including, What are the genetics of VWD? How do I manage my VWD? Can I get joint bleeds with VWD? This nurse-led workshop will go over the basics of VWD and give participants a chance to ask questions so they can walk away feeling informed about their health! Provided by Sue Geraghty, RN, MBA Sue Geraghty 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 She has over 40 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 in Currently she is working as an independent consultant in the areas of bleeding disorders and health care education. Step It Up Living a Healthy Lifestyle with Hemophilia Being active is key. Especially when you have hemophilia. We ll discuss ways patients can stay active and reach their personal goals while being protected. We will also cover how to communicate better with your doctor, patient, or loved one. We will stress the importance of maintaining a healthy lifestyle through proper nutrition and exercise. Provided by

6 Linda L. Pollhammer BSN, RN Linda has worked as a Nurse Educator Specialist serving the Hemophilia Community since 2010 before transitioning to the Patient Affairs Liaison position in April of She also has worked in the specialty pharmacy arena in every capacity. Linda received her Bachelors of Science in Nursing degree from the University of Maryland school of nursing and brings over 35 years of experience in clinical nursing, nursing education and nursing management. Nutrition: Medication, Herbs & Supplements That Increase Bleeding During this presentation we will learn how vitamins and supplements play a role in our health. We will discuss foods, supplements, and medications that increase bleeding. Provide by: Mimi Ruiz Castaneda Mercedes Mimi Ruiz Castaneda is an experienced nurse practitioner with the coaching skills and medical expertise to help patients reach their goals. She is the current Hemophilia Clinical Advisor for the Southeast Region with CVS Specialty. Her previous work experience was in Hematology Oncology as a Registered Nurse in Miami Children s Hospital. She also has Family Practice and Emergency Room experience. She obtained both her Master s in Family Practice and Bachelor s in Nursing degrees from the University of Miami. She also has a Bachelor s degree in Telecommunications from the University of Florida. She is passionate about empowering her patients to take control of their health. Mimi comes from a large family of six children. She enjoys spending time with her family and friends. She is also a certified health coach. In her free time, she enjoys running, exercising and traveling. Show Me Where It Hurts: Pain, Anxiety and Depression Mental health and physical health are closely related. This presentation will discuss how pain, anxiety and depression can be intertwined. We will explore coping strategies, ways to work with a healthcare team, and lifestyle approaches that can improve well-being and put us back on track to enjoying life and loved ones. Provided by: Georgia Panopoulos, PhD, LP Georgia Panopoulos, Ph.D., is a Licensed Clinical Psychologist who maintains a private practice and also works at the HealthPartner s Riverway Pain Clinic. She works with clients presenting with chronic medical illness and helps clients heal from past medical or other traumas. Georgia is originally from St. Louis, Missouri, where she completed her undergraduate studies at Washington University. She majored in Psychology with minors in Biology and Sociology. Georgia earned a master s degree in Experimental Psychology from Villanova University in Philadelphia, Pennsylvania. She received her doctoral degree from the University of Georgia in Athens, Georgia in To this day she attributes her acceptance to the University of Georgia to having the same name as the University. Throughout her graduate career, her research focused on acute and chronic pain management in children and adults. Georgia completed a fellowship in Behavioral Medicine at the Mayo Clinic in Rochester, Minnesota. Georgia teaches cognitive-behavioral strategies, self-hypnosis, and uses EMDR to treat patients with chronic pain. She has worked at the University of Minnesota s TMD clinic, Minnesota s Head and Neck Pain Clinic, and the University of Minnesota Fairview Pain Management Center, before working with the HealthPartners

7 Riverway Pain Clinic. She is also a frequent lecturer for the National Hemophilia Foundation. At home, she enjoys watching her 13, 11, and 5-year-old daughters on the soccer fields where Georgia spends much of her free time. The Journey of Factor: A Deeper Dive This presentation provides a deeper dive on how factors work in the blood clotting process and how factor treatment replaces missing factor VIII (FVIII) or factor IX (FIX) within this process. Also, the topic of how factor offers options for individualized treatment will be discussed. Provided By April Littrell, RN April Littrell has been advocating for the bleeding disorder community for the past decade. She spent the last 19 years at Walgreens/Option Care, managing different disease states including bleeding disorders. April started a support group in her area for local bleeding disorder patients. She has long history of education with rural schools, healthcare providers and families. She is passionate about education. Prior to home infusion, April worked in NICU. April enjoys working and hiking on her 80-acre Farm with her family. Tackling Transitions: From Tots to Teens and Beyond Transitions are never easy. During this panel discussion, hear from the experts, those with bleeding disorders, as to how they transitioned through the stages of life with bleeding disorders. Learn valuable tips and tricks to help your children become independent adults. Moderated by Sarah Shinkman from HFA with Community Members; Sue Martin, Connie Graham, Larry Glenn, Jr., Lovee Johnson-Lundy Provided by: Sarah Shinkman Sarah Shinkman is the Advocacy & Outreach Manager for the Hemophilia Federation of American (HFA). Prior to HFA, Sarah led the volunteer department at Make-A-Wish Mid-Atlantic, managing 800 volunteers to grant wishes for kids in the chapter s region. Sarah developed a passion for engaging people in service and advocacy work as an AmeriCorps Member in Washington, D.C., where she coordinated servicelearning programs for student and adult volunteers. Sarah graduated from St. Michael s College in Vermont with a degree in Political Science and currently resides in D.C. with her husband. Infusion Workshop will be available for parents, grandparents, spouses and patients. It is important to understand the process of self-infusion and independence. Learn and share in this class designed just for our community! Provided by Robin Jones, MSN, MHA, RN, CPN, CPHON Robin Jones is the South Carolina Hemophilia Treatment Center Nurse Coordinator and a Nurse Navigator for the Children s Cancer and Blood Disorder Clinic. She has worked in the clinic since receiving her ADN

8 in Since then, she received her BSN in 2004 and a dual master s in nursing and health administration in Robin has received certification as a pediatric nurse and a pediatric hematology/oncology nurse. She is an instructor for the Association of Pediatric Hematology/Oncology Biotherapy and Chemotherapy Provider course. Robin also provides infusion training for patients and their families. She does this in coordination with the SC Hemophilia Chapter yearly and during Camp Burnt Gin. Robin has been a staff nurse at Camp Kemo since 2001 and for Camp Burnt Gin since Camp Kemo is a weeklong camp for children with cancer and Camp Burnt Gin is a camp for children with bleeding disorders. At Camp Burnt Gin, she holds a class at least twice during the week to help the children learn more about their diagnosis as well as train them on how to self-infuse. Robin is a single mother to three children. She enjoys spending time with her family and crafting. She also enjoys being part of the hemophilia community and attending different events. Teen Programming Stop the Bleeding Stop The Bleeding! (STB!) is an award-winning comedic web series about bleeding disorders, created by and starring community member Patrick James Lynch. During STB! Educational Workshops, Patrick will distribute STB! Activity Book pages to all teen participants, lead a viewing of episodes from the most recent season, then use the workbooks to capture thoughts and facilitate conversation about the educational themes highlighted in those episodes. Two of the topics we'll highlight for this workshop are Dating & Disclosure and Mental Health. Watch episodes and learn more at Stop The Bleeding! is made possible by Patrick James Lynch- (See above Bio) Finding Your Place in the Sports World Playing sports for anyone living with a bleeding disorder can be challenging. Feeling pressure from peers about sports can make it twice as difficult. In this session, teens will have the opportunity to identify safe sports for those with bleeding disorders, identify where and how they can participate, and also discuss how they can overcome some of the social pressures that arise surrounding the sports world. Sarah Shinkman (See Bio above) Provided by Children s Education Kids Camp Wacky Olympics Provided by Corporate Kids Events, Inc.

9 Meet George! and his Port Infusion Meet George! An interactive presentation for children 3-8 years old. During this time participants will partake in therapeutic play with George in order to educate and decrease anxiety around infusions. We will explore George s target joints as well as his venous access devices. Provided by Mimi Ruiz Castaneda (See above Bio) Karing for Kids- Junior Scientist Ages Junior scientists discuss the molecular structure of cells and the mysteries of DNA. We explore the role that genetics play in determining inheritance of a bleeding disorder. This includes active participation in a fun, scientific and memorable experiment conducted to show actual DNA structures of our bodies. Attendees also have the opportunity to discuss ways to communicate his or her condition with others. Provided by: The Exhibit Hall Opportunity Meet, discuss and explore products and services with our Drug Manufacturer Representatives and Home Care Specialists while visiting the Exhibit Hall during breaks, lunch and in the afternoon. Hear about all the new treatment options, new factor products now out and coming to market or newly introduced. Discuss different treatments therapies, services and products and become knowledgeable about your hemophilia and bleeding disorders options. We always recommend that you to discuss all treatment options and questions with your healthcare treatment team. Please also be mindful about providing your personal contact information. Please feel free to also ask for business cards so you can call for additional information at a later date.

10 HSC s 2018 Academic Scholarship Award Winners MaRee Johnson: MaRee Johnson is a sophomore at Valdosta State University. She studies Business Management. She plans on pursuing her MBA and obtaining a certificate of Spanish for Professionals. She is the older sister to her two brothers, Marques and Laithan, both diagnosed with Hemophilia A severe. She loves working with underprivileged children and hopes that she ll be able to give back to them in the future. She values every relationship and experience she s had through being a part of the Hemophilia of South Carolina Chapter. I have learned a lot from my brother and other members of the hemophilia community about turning my weaknesses into strength. For the 50 things I can t do, there are 100 more that I can do. Without hemophilia being a part of my family s life, I wouldn t have met such beautiful people or experienced opportunities that can only come from being a part of this community. Samantha Nash: Samantha Nash is a sophomore at Clemson University majoring in Marketing with a minor in Communications and Sales Certification. She is part of the Alpha Deltas Pi Sorority and is very involved in charity work. Sam has a brother with severe hemophilia who is working on his videography skills. Sam would like to work in the field of bleeding disorders as it is close to her heart. The Hemophilia Chapter has contributed to my life in every aspect. Even though I don t have a bleeding disorder, this community provides so many ways to support my family and myself. We are one big family. Dillon Snead: Dillion is a senior at Clinton High School and will be attending Clemson University in the fall. His field of study is Engineering. He is a member of the Science Olympiad Team competing in state and national competitions. He is a member of the Clinton High School Beta Club, a member of the National Honor Society and currently is on the Principal s Cabinet. His recommendation letters describe him as genuine, sincere, and humble. Dillon is a brother to a younger sibling with severe hemophilia. Hemophilia has brought me closer to other people that I would have never met before if my family had not had it. I was able to meet a lot of great friends and adults that I could consider as part of my family because of hemophilia. Christopher Shumard: Christopher Shumard is a senior at Goose Creek High School. He enjoys reading, surfing the web and playing videogames. He is an avid reader. He is a member of the Beta Club and attends national conventions where he has received three awards for the History Test. Numerous recognitions for his academics have been awarded to him throughout his school career. Christopher has a diagnosis of hemophilia. His goals are to receive his PhD degree at Clemson in History and Education. This scholarship will be a welcomed contribution to my goals and will help protect my hopes, dreams and my future. Michael Keith: Michael Keith, Jr. is a senior at Irmo High School. He will be attending USC in the fall. His field of study is a Bachelor s of Science Degree in Exercise Science. Michael enjoys basketball, running and listening to music. He spends time at the Hope Worldwide Community Outreach helping teens study the Bible. He has won numerous academic and athletic awards to include the Student Athlete of the Year Award in His goal is to become a Chiropractor. Michael s father has hemophilia. With my family s background with hemophilia and love for physical activity, I want to become a Chiropractor and help relieve pain, allowing people to feel better doing the things they love.

11 Tariq Walker: Tariq Walker is a senior at Woodmont High School. He is pursuing a degree from the College of Charleston. His desires are to pursue a pre-dental license and then attend a medical college to get a degree. He enjoys reading comic book series and playing video and sports games with his family and friends. He enjoys the game of basketball. Tariq belongs to the Beta Club and has been a part of the National Honors Society. He has volunteered in his community, church and school. He and his identical twin brother have a diagnosis of hemophilia. This scholarship would allow me to interact with the community more than I would have been able to before, since I would be able to work fewer hours to pay off my student debt. Tamir Walker: Tamir Walker is a senior at Woodmont High School and an identical twin to his brother Tariq. He is planning to attend the College of Charleston in the fall to pursue a career as a Registered Nurse. Tamir s hobbies are playing video games, collecting and reading comic books, and watching TV. He is employed as a server at IHOP. He is in the Woodmont High School Beta Club, Link Crew, and the Comic Book Club, where he is the secretary. He has also been part of the National Honors Society. Tamir volunteers at the Veterans Clinic and around Woodmont High School. Both Tamir and Tariq have above 4.22 GPA s. The scholarship would put me one step closer to achieving my career goal of becoming a Registered Nurse while expanding my knowledge and gaining real world experience at the College of Charleston. We wish to thank all our sponsors for their commitments to this event! Premier Sponsors Platinum Sponsors Wish Special Appreciation to our National Organizations

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