Victory for Women
Industry Symposium I - There When You Need Us: Yesterday, Today and Tomorrow
Speakers: Tammuella C. Singleton, MD; Judith Kauffman, NP; Consumer Speakers: Michelle, Jessica, Chama
This message of the Legacy of Baxter will be told through stories from patients/caregivers of all ages and who have a range of experience on Baxter’s treatments including past experience with early treatment methods to today’s standards such as prophylaxis regimens, examples of the advancements in convenience in treatments, and other effective progressions of standards of care for hemophilia. In addition to emotionally engaging stories that highlight personal accounts, a healthcare provider will summarize the history of hemophilia and conclude with how Baxter treatments play an important role in patient care.
Breakfast will be served at 6:30am.
Developed and Sponsored by Baxter Healthcare Corporation
Industry Symposium II - RICE Might Not Be So Nice! Evaluating Choices for an Individualized Approach to Joint and Muscle Bleeding
N, PT, P
Speakers: Leonard Valentino, MD(1) (moderator); James Munn, RN(2); Kim Baumann, MPT(3); Angela Forsyth, PT, DPT(4); Audrey Taylor, RN, BSN, MSN, APN FNP-BC(5)
(1)Rush Children's Hospital, Chicago, IL; (2)University of Michigan Hemophilia and Coagulation Disorders, Ann Arbor, MI; (3)Fairview Hemophilia and Thrombosis Center, Minneapolis, MN; (4)Rush Children's Hospital, Chicago, IL; (5)Rush University Medical Center
RICE (rest, ice, compression, elevation) has been used as a first line treatment approach to joint or muscle trauma in hemophilia patients as well in the general population. However, as evidence mounts in the general population that this approach may be counterproductive in some circumstances, a panel of experts will examine and debate the evidence as it pertains to acute bleeding in hemophilia. Panelists will explore other treatment paradigms, the role of inflammation in wound healing, and the usefulness of ice in treating acute bleeds.
Breakfast will be served.
Developed and Sponsored by Biogen Idec Hemophilia
Fit 'n' Fun Walk/Run (Outdoors)
Join the Physical Therapy Working Group for a sunny Orlando walk/run on the beautiful hotel grounds. Fitness instructors will lead participants in a series of morning stretches and then guide both faster- and slower-paced groups.
Marketing and Communication Tips for Chapters
Speaker: Jordan Black
This interactive session includes discussion and tips for using effective marketing techniques to make your organization relevant to your members and to the community at large. Through a discussion format, attendees will learn the basics of marketing communications, why it is important to the life of your organization, and how to best apply these techniques in every day practice.
Steps for Living
Speakers: Ayana Woods, MPH; Chad Feay: Christie VanHorne, M.Ed, MPH
Come learn about Steps for Living, NHF’s newest educational program! The Steps for Living Web site is a great resource for information on bleeding disorders for kids, adolescents, adults and health educators to promote healthy living for the whole family. It’s a practical tool kit to help families deal with the daily challenges of living with a bleeding disorder and make healthy decisions throughout all life stages. Steps for Living is composed of four sections: First Step, ages 0-8; Next Step, ages 9-15; Step Up, ages 16-25; and Step Out - a new section for adults 26 and up. We’ll also show you videos, games and interactive elements available on the site.
NHF Ethics Committee—What Can We Do For You?
One in a Million: Rare Bleeding Disorders
Speaker: Anne Greist, MD
Join us for this session where we will uncover some of the rarer bleeding disorders. We will discuss the signs, symptoms and mechanics of the disorders; available treatments; and issues faced by patients.
I Can Have a Bleeding Disorder & Live a Big Life
Speakers: Diane Standish, LSW; Randall Curtis, MBA; Lilliam Bervis; Eric Burgeson; Danielle Schwager
There are many different perspectives on living with a chronic illness and many reasons to be optimistic. During this session we will focus on finding balance in your life, and finding ways to develop your natural skills and abilities. We will look at healthy ways to integrate your bleeding disorder with your identity and hear from others who have used their skills in creative, fulfilling ways. Your bleeding disorder is only one part of who you are. Join us to learn how to develop your whole person and tap into your many talents.
Sponsored by CSL Behring
It's a Small World After All: Telemedicine in the HTC
9:30 AM - 11:15 AM
Moderators: Ellen White, RN, MSN; Michelle Witkop, DNP, FNP-BC
Speakers: Kristen Jaworski, RN, BSN, CCRC; Michelle Witkop, DNP, FNP-BC; Roshni Kulkarni , MD; Judith Andersen, MD
By the end of this session, you will know the definition of telemedicine, be able to describe the role of the originating provider and the distant provider, and be able to describe how telemedicine can be used in the research role.
Consequences of Blood in the Joint: Science to Clinical Practice
9:30 AM - 11:15 AM
Speaker: Angela Forsyth, PT, DPT
Prevention of joint bleeding to protect structures such as the synovial membrane, cartilage and bone from detrimental changes is optimal, but not entirely feasible at this time. Therefore, we frequently must rely on medical and adjunct treatment administered at the time of bleeding to minimize the negative effects of blood in the joint. Advances in treatment that healthcare providers are able to offer people with hemophilia begin with basic science. In this session we will discuss multiple concepts taken from scientific research that may influence future clinical practice and our ability to affect inflammation, wound healing, synovitis, cartilage and bone, and minimizing the negative effects of blood in the joint.
The Social Work Intervention in Pain Management
9:30 AM - 11:15 AM
Moderator: Cathy Hulbert, LCSW
Speaker: Christi Humphrey, LCSW
During the session we will focus on the role of the social worker in pain management of people with hemophilia. Program participants will review research and literature findings on cognitive therapy and mindfulness-based stress reduction (MBSR) and their use as direct interventions with clients in pain. Participants will experience MBSR techniques and tools during the course of the session, and expand their clinical skill set for treatment of pain.
Been There, Done That: Raising Parents When You Have a Bleeding Disorder
Moderators: Jennifer Maahs, MSN, PNP; Tonya Hegwood, MSW, LCSW
Speakers: Michele Cecil; Brent Movitz; Jozef Zwier
A panel of young adults with bleeding disorders will share childhood experiences of their parents’ adjustment to their diagnosis. We will discuss the challenges a bleeding disorder can present, as well as the growth that can occur in both parents and children as a result. This will be a conversation for all, with the goal of reassuring new families that life with a bleeding disorder need not be as frightening as the initial diagnosis.
The Glass is Half Full: Reframing Emotional Challenges for Women
Moderator: Patrice Thomas, MS, MSW
Speakers: Danielle Nance, MD; Barbara Forss
Many women with bleeding disorders have experienced the frustration of missed diagnosis, the physical and emotional pain of untreated bleeding conditions, and the embarrassment of disclosing personal information in order to explain why they are not feeling well. For some women, there is also guilt associated with passing a genetic condition on to their children. This session will provide a time for women to reflect on their feelings about their lived experiences with bleeding disorders or those of their loved ones, and learn about various techniques for coping.
Who’s On First? Intentional Succession Planning
Moderator: Dawn Rotellini
Speakers: Lynne Capretto, MA; Christine Rowe
Succession planning is a process through which an organization develops and grooms its employees or volunteers for recruitment and promotion purposes. The goal is to fill key roles within the chapter with well-trained employees or volunteers, often prepared through skills development for the assumption of more challenging duties within the organization. Two chapters will share how they have gone through the succession planning process as a normal course of doing business.
A Taste of PEP
Speakers: Jennifer Foster-Fausett, BSN, RN; Alex Lowe; Danna Merritt, MSW, LMSW
Come for a taste of PEP. This special session is designed to strengthen parents who have a child with a bleeding disorder. While addressing the physical and emotional issues related to raising a child with an inherited, complicated bleeding condition, participants will strengthen their behavioral management and communication skills. All participants will receive a workbook to use during the session, which they will take home packed full of parenting skills and information. The session will be taught by a trained PEP team including a parent peer, nurse and social worker.
What Do You Want to Be When You Grow Up? College and Career Choices
Speaker: Don Molter, MEd.
Do you want to be a doctor, lawyer, artist or professional athlete when you grow up? Let us tell you how. Join us for a discussion on planning for your future, resources that are available, and how to advocate for yourself and take personal responsibility. We will focus on scholarship opportunities and grants, the importance of career and personal inventories, the importance of class selection and performance, and hear success stories from our panelists. You will learn how to use Internet and college search engines, the importance of the Free Application for Federal Student Aid (FAFSA) and the role that vocational rehab can play.
Mirror Mirror on the Wall, What is a Carrier After All? Caring for the Carrier
11:30 AM - 1:15 PM
Moderator: Kim Schafer, RN, BSN
Speakers: Jody L. Kujovich, MD; Joann Deutsche, FNP-BC
This session reviews how FVIII and FIX carriers are identified, and will explore the latest information on related bleeding manifestations. The importance of identifying and managing anemia related to blood loss will be included. Additionally, the effects of aging and related factors on FVIII levels, including the importance of FVIII’s role in thrombosis, will be presented.
Art or Science: Musculoskeletal Management of Hemophilia for Physical Therapists
11:30 AM - 1:15 PM
Moderator: Eileen San Juan, MS, PT
Speaker: Alice Anderson, PT, DPT, PCS
Art or Science: You are the PT. You know anatomy and kinesiology. You know the basic pathophysiology of hemophilia. But what recommendations will you provide for the person with a bleeding disorder who is sitting in front of you? RICE? Don’t participate in collision sports? This session will focus on what we know, what we think we know, and what we hope we know about an evidence-based approach to the musculoskeletal management of persons with bleeding disorders.
Unexpected Highs: A New World in Street Drugs
11:30 AM - 1:15 PM
Moderator: Colleen Joiner, LMSW
Speakers: Paula Lipton, LCSW; Lance Rice
This session will focus on education and information about illicit and “street” drugs that are commonly abused. We will be discussing the different names, types and components of “street” drugs and illicit drugs. Drug side effects and possible symptoms or warning signs of abuse will be elaborated on. You will learn about how common household items and normally prescribed drugs are being abused by both youth and adults today.
When a Band-Aid® & a Hug Are Not Enough: Pain Management & Alternative Therapies
Speaker: Angela Lambing, MSN, NP-C
This session will review hemophilia pain and how it may be perceived. We will look at data from the National Pain Study and discuss nonpharmacological approaches to pain management with an emphasis on collaborating with your hemophilia treatment center for optimal pain management options. We will learn to recognize the many different types of hemophilia pain and understand how different nonpharmacological strategies can assist in pain management. In addition, we will identify how teens may differ in their expression of pain.
Wrapping it Up—Closing & Good-byes
Speaker: Michael Craciunoiu
Chapter leaders will learn about what NHF Chapter Services staff has planned for you in 2013. Do you need more support for your chapter? This is the time to ask. Learn about the results and suggestions from the Summer Chapter Leadership Seminars. Attend this session and enter to win a free round-trip flight to NHF’s 65th Annual Meeting in 2013.
World Federation of Hemophilia Update
Speaker: Val Bias; WFH Representatives
Find out about what life is like for people with bleeding disorders in developing countries, particularly Africa, one of the most underserved regions of the world, and what NHF and the World Federation of Hemophilia (WFH) are doing to help improve care. We will screen “the Winning Coalition,” one of the WFH's 50th anniversary films directed and produced by Marilyn Ness (Bad Blood), which tells the story of Dr. Saliou Diop’s personal quest to save the lives people with hemophilia in Senegal. NHF CEO Val Bias will talk about the NHF’s new twinning partnership with the Haemophilia Foundation of Nigeria, and we will highlight the WFH’s new Close the Gap campaign, which aims to minimize the divide between those who have access to care and those who do not.
NHF Official Annual Meeting & Awards Luncheon
Special recognition will be given to the remarkable and distinguished individuals among our healthcare providers, chapter staff and volunteers, and for best practices in the bleeding disorders community. Join us to honor our Awards of Excellence winners, including Physician of the Year; Researcher of the Year; Nurse, Physical Therapist and Social Worker of the Year. Watch short videos on positive contributions to the bleeding disorders community. In addition, the Awards of Distinction will honor the highest caliber chapter programs in health education, outreach, communication and collaboration.
3:00 PM - 6:00 PM
Moderator: Kay Craig, PT
Speaker: Sharon Dunseath, PTA, BS
Due to physical therapy regulations, this technical training session may only be attended by licensed physical therapists. Please be prepared to sign in with your license number at the door. During this session we will focus on the practice of aquatic therapy and benefits for the bleeding disorders population. We will discuss the principles of aquatic therapy, indications/contraindications and benefits. We will have the opportunity for demonstration and practice in the water so please come prepared with swim suit, towel, and layers for warmth as needed. By the end of the session you will better understand the theory of aquatic therapy and application for treatment to improve functional mobility.
Creative Social Work Programming
3:00 PM - 6:00 PM
Moderators: Peg Geary, MA, MBA, MPH, LCSW, CCM
Speakers: Peg Geary, MA, MBA, MPH, LCSW, CCM; Elissa Kraus, MS, CGC; Don Molter, MEd; David Rushlow, LMSW
Understanding Hemophilia Genetics: How Can We Help? Social Workers will be given an introduction to basic hemophilia genetics, including pattern of inheritance, risk determination, and molecular testing and analysis. Using case scenarios we will discuss the implications of DNA testing on the patient and family, and the complex ethical issues surrounding the disclosure of results. We will explore the psychosocial dynamics of the burden and consequences of genetic knowledge. Participants will identify and explore ways to assist patients and families cope with the all-too-common reactions of guilt, shame and blame.
Career Counseling for Adolescence: During this session will focus on the role and importance of career counselors within the bleeding disorder community. We will discuss advocacy skills for parents and students, the differences between Healthcare Plans, IEPs and Section 504 plans and when each plan should be appropriately used. You will learn about the importance of early career testing, scholarship searches, and school/community involvement activities.
Utilizing Telemedicine in Rural Communities: This session will focus on implementing a telemedicine program at your HTC. We will discuss funding, the protocols and technology necessary to run such a program. You will learn how this innovative technology can improve access to healthcare and quality of care for the rural patient population. You will also learn how to assess client readiness and delivery of social work intervention techniques using telemedicine as a therapy tool.
Legacy: The Hemophilia of Yesterday
Speaker: Matthew Dean Barkdull, MS, LMFT, MedFT
Join us in hearing the story of Ralph Dean Rytting, a young man living with hemophilia in the 1920s as told by his grandson, Matthew Dean Barkdull, who is the author of the book Legacy: The Hemophilia of Yesterday. Take a journey to the past to understand hemophilia treatment and the patient’s emotional, physical and psychological burdens during this time. Matthew tells an inspiring and courageous story and helps us to remember that the past can be a healing influence that can decrease stress and anxiety today.
Live Streaming Sponsored by Baxter
Wish Upon a STAR™
3:15 PM - 4:15 PM
Moderator: Carolyn Francis, RN, CNP, MS
Speaker: Paul S. Cooper, MD
Learn about the Scandinavian Total Ankle Replacement (STAR™) from the Medstar Georgetown University Hospital's leading foot and ankle surgeon, Paul S. Cooper, MD. Dr. Cooper will discuss ankle anatomy; what makes the bleeding disorders patient an ideal candidate for the STAR; the advantage of ankle replacement over an ankle fusion; and preoperative, post-operative and rehabilitative care. He will talk about how bleeding disorders patients are doing and will be expected to do in the future. Having performed more than 1,000 ankle replacements, Dr. Cooper will share his experience, challenges and hopes for the future of ankle replacement therapy.
Camp Nursing: Heigh-Ho, Heigh-Ho, It's Off to Camp We Go
4:30 PM - 6:00 PM
Moderator: Ellen White, RN, MSN
Speakers: Jennifer Meldau, MSRN, CPNP; Madeline Cantini, BSN, RN, CCRC; Jim Munn, RN, MS
This session will focus on the role of the HTC nurse in the camp setting. After a brief discussion of the history and types of camps offered for those with bleeding disorders, the speakers will focus on the following: health center guidelines developed for camps serving those with bleeding disorders; ways to address campers' other co-morbidities besides their bleeding diatheses; and the benefits to both the HTC nurse and the camper in this type of setting. We will also discuss the importance of self-infusion teaching and ways to accomplish this at camp, the importance of teaching within the camp setting, how other health-related topics that support the care of children with bleeding disorders can be incorporated at camp, and ways to make the learning experience fun.
Medical Marijuana: What’s It All About?
Speaker: Michelle Witkop, DNP, FNP-BC
During this session we will discuss the evolution of marijuana as a medical strategy for symptom management. We will review the history of medical marijuana, look at the challenges and barriers in using it for medical purposes, and discuss its effects on the body.
Final Night Event-New York Street Party at Universal Studios Florida
Unwind with a night at the theme park! Join us for a New York Street Party at Universal Studios Florida ® for fun-filled kid and adult friendly attractions, music, dancing, arcade skill games and great food.
Please note: Each full registrant receives one admission for the Final Night Event. Additional admissions can be purchased for $30 at the Registration Desk on Saturday, November 10, 2012.
Sponsored by Biogen Idec Hemophilia