CNF = P = MD = N = PT = SW = CS = CSO = V4W =

Consumer/New Family All Providers Physicians Nurses Physical Therapists Social Workers Chapter Staff Chapter Staff Victory for Women

Industry Symposium I - Charting the Course: Real-Life Stories of Individuals Living With Hemophilia
A
7:00am-9:00am
Moderator: Patrick Torrey

People with hemophilia know first-hand about the importance of overcoming everyday challenges. In this program, individuals just like you will share their inspirational stories of how they work to meet their personal goals and reach their fullest potential.Our panel will discuss key questions, including: How has living with hemophilia shaped their personal lives?How do individuals with hemophilia plan for key milestones? What can be done to prepare for the future? Please join us as our panel shares their personal stories and guidance to help you chart your own life course.

Breakfast will be served.

Developed and Sponsored by Pfizer, Inc.

Industry Symposium II - Healthcare Reform: What You and Your Family Need to Know and How to Manage Your Insurance
C, CS, NF
7:00am-9:00am
Speakers: Michele Monahan and Christine Jarosz

Join your community for Bayer HealthCare's interactive LINK program about healthcare changes happening on Capitol Hill that may be affecting you. Discussion topics ed will include: healthcare reform and hemophilia A; what healthcare reform means to you and your family; what hemophilia treatment centers offer and the basics of insurance coverage.

Breakfast will be served.

Developed and Sponsored by Bayer HealthCare

Industry Symposium III - Imagine the Possibilities: How Partnership and Support Can Make You Reach Your True Potential
A
7:00am-9:00am
Speakers: Craig Kessler, MD, Grant Hiura, Patrick Tomlinson, Kelly Champagne

If hemophilia wasn’t a factor, what would you dream of doing? Now, add hemophilia back into the equation and imagine how you could accomplish your dream. Think it can’t be done? Think again. Our inspiring and interactive panel discussion will celebrate the success stories as told from the patient, caregiver, and healthcare professional perspectives—helping you realize your possibilities beyond the real and projected challenges of life with hemophilia. You will hear about great achievements, plus share real-life tips to overcoming your personal challenges. You’ll feel empowered to go out and pursue your dream, no matter what that dream may be.

Breakfast will be served.

Developed and Sponsored by Novo Nordisk

Facilitating Continuity of Care for Patients with Hemophilia with Inhibitors
N
7:30am-8:45am
Speakers: Jennifer Maahs, PNP, MSN; Michelle Witkop, DNP, FNP-BC

Hemophilia necessitates ongoing medical care, a fact that is magnified in patients with inhibitors. Because bypassing agents are generally less effective than standard factor concentrates, these patients have an increased risk of uncontrolled bleeding and of progressive joint disease. Moreover, these patients need early intervention during a bleeding event to improve the odds of bleeding control. Thus, patients with hemophilia with inhibitors have an extra layer of complexity in managing their condition and a heightened need for continuity of care.

By their interdisciplinary nature, hemophilia treatment centers (HTCs) are uniquely suited to provide continuity of care to patients with inhibitors. Yet, some patients do not fully take advantage of the resources at their HTCs. Some HTCs are on the leading edge of finding innovative ways to improve the continuity of care provided to the patients they serve, whether through the HTC or out in the community. Examples of such programs and practices will be examined during this symposium.

Supported by an educational grant from Novo Nordisk

Steps for Living & NHF’s Mentoring Program
CNF
8:30am-9:30am
Speakers: Ayana Woods, MPH; Chad Feay; Christie Van Horne, M.Ed, MPH

Come learn about Steps for Living, NHF’s newest educational program and MentorConnect. 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 is a practical tool kit to help families deal with the daily challenges of living with a bleeding disorder and make healthy decisions throughout the life stages. We will also discuss MentorConnect, a new national Web- and phone-based mentoring program funded in partnership with the CDC. The goal of MentorConnect is to link newly diagnosed parents to families with more experience raising a child with a bleeding disorder to decrease feelings of isolation and help provide support for challenges they may be facing.

Plenary on Inhibitors
N MD
9:00 AM - 12:00 PM
Speaker: Chris Guelcher, MS, RNCS, PNP

Dual Diagnosis - Working with Patients with Hemophilia and Mental Illness
SW
9:15 AM - 11:15 AM
Moderator: Michael J. Lammer, LISW
Speaker: Walter E. Kisthardt, PhD, MSW

Dr. Kisthardt draws upon his research with treatment providers in 42 states relating to effective interventions with participants who struggle with dual or multiple diagnoses. This workshop will be informative and interactive. Providers are encouraged to prepare for the workshop by selecting a challenging helping situation in which we may model the application of Strengths-Based, Person- Centered Practice. The four essential components of the approach – Engagement, Strengths Assessment, Personal Wellness/Recovery Planning and Group Supervision – will be explored.

Roundtable: Advocacy
CS
9:30am-11:15am
Speakers: Kelly Waters; Bob Fox; Ruthlyn Noel; Marla Feinstein; Merlin Wedepohl; Michelle Rice; Ellen Riker; Johanna Gray, MPA; Tony Maynard; Heidi Scanlan

Chapter leaders, you are invited to attend this two part session designed to bring you up to date on the political climate post election day and the impact it may have on the health reform implementation process and to provide you with an opportunity to visit one of four interactive roundtables where chapter leaders can share lessons learned and approaches taken in their local advocacy efforts.  Topics include How to Create a Legislative Day in Your State; How to Build an Advocacy Committee; How to Contact Stakeholders, ie Medicaid, Department of Health and Welfare, Private Insurers, etc.; How to Train Chapter Volunteer Speakers.

Sponsored by Biogen Idec Hemophilia

I Don’t Need a Support Group, I Have Facebook! The Pros & Cons of Social Media as a Support System
CNF
9:45am-11:15am
Moderator: Christie VanHorne, MEd, MPH
Speakers: Edward Kuebler, LCSW; Sonji Wilkes; Tom Joseph; January W. Payne

Social media offers the opportunity to “meet” others with your rare disease, to relay experiences and search for answers for those difficult questions. The potential is endless! But how much is too much? The collection of personal data is a real danger. While it is important to decipher inaccurate information from unverifiable sources, social media is the reality of our time. We will discuss the role social media plays in the bleeding disorders community, the importance of privacy and the benefits of being online.

Blood Safety Update: Global Blood Safety, Optimizing Treatment and the Affordability of Care
CNF
9:45am-11:30am
Speakers: Brian O’Mahony, Mark W. Skinner

Over the next few years, we will see a revolution in treatment not seen since the 1960s. Treatment products will advance on all fronts, from viral-inactivated (solvent detergent) cryoprecipitate, biosimilars of current therapies and treatment products with substantially enhanced efficacy to the increasing likelihood that through gene transfer a “cure” may become a reality

The blood safety concerns of the past have been replaced by current concerns about maintaining vigilance against such blood-borne agents as viruses and prions. Equally important are the challenges of adequate factor supply and access to products around the world. This session will describe how patients have started to join forces to bring all key stakeholders together to ensure that the views of product users are considered when it comes to access to these vital therapies. During this session we will also address the challenges of answering US government and payer demands for evidence-based medicine, and cost justification for the introduction of new therapies and enhancement of current treatments.

Research Update: My Life, Our Future: Understanding the Role of Genetic Testing in Hemophilia
CNF
9:45am-11:30am
Moderators: Glenn Pierce, MD, PhD, Chief Medical Officer, Biogen Idec Hemophilia
Speakers: Marion Koerper, MD; Diane Aschman MS; Barbara Konkle, MD

This session will introduce an innovative partnership of the National Hemophilia Foundation (NHF), American Thrombosis and Hemostasis Network (ATHN), Puget Sound Blood Center (PSBC) and Biogen Idec Hemophilia, which will offer free or low cost genetic testing and analysis to patients and members of families with hemophilia while advancing scientific research of genetics and hemophilia. The founding partners and other representatives of the community will participate in an interactive panel discussion, provide an overview of genetic testing and its value, as well as present details about the new program and how it can benefit patients, carriers, and their families now and for generations to come. Time will be allotted for open Q&A.

Sponsored by Biogen Idec Hemophilia/Live Streaming sponsored by Biogen Idec Hemophilia

Weighty Matters: Overweight with a Bleeding Disorder? Why it Matters and What we can do about it
PT
9:45 AM - 11:15 AM
Speaker: Ruth Mulvany, DPT, MS, PT

This session will review current research on prevalence and impact of overweight conditions in patients with bleeding disorders. We will analyze the biomechanical stress of weight loading on joints and multiple body systems, and will review how being overweight adversely affects people with bleeding disorders even more than the average population. Examples of calculations for biomechanical stress will be given. Research on weight-loss strategies will be reviewed and participants will develop at least one strategy for counseling/patient education, safe exercise for fitness, wellness and weight loss, motivation and promotion of self-management.

Management of Sports Participation
PT
11:30 AM - 1:15 PM
Moderator: Christine Rowell, MSPT
Speakers: Cindy Bailey, PT, DPT, OCS, SCS; Sherry Herman-Hilker, PT, MS; Janice Kuhn, RN, MPH; Steven Pipe, MD

This session provides a general overview of teenagers’ physical attributes, changes and challenges in sports training and participation. Participants will be educated on the need for communication between parent, coach and athlete for frequency and intensity of workouts. Participants will be educated on the need for incremental and stair step training. This session also provides education on the complications rapid teenage growth spurts add to the joint control and strength. This session will also host of an open forum discussion related to the clinical decision-making process of healthcare professionals regarding participation in physical activity and sports. Challenges faced in this process including economic and financial considerations and quality of life will be included. It will identify and explore questions and areas of concern and raise awareness of important factors to consider beyond the more apparent physical risks and benefits when advising patients about sport participation, and discuss and document concerns faced by healthcare providers for further exploration.

Helping Parents Manage Difficult Behaviors in Children with Hemophilia
SW
11:30 AM - 1:15 PM
Moderator: Eric Iglewski, LMSW
Speaker: Nathan J. Blum, MD

This session will help clinicians to counsel parents whose chronically ill children are exhibiting difficult behaviors. Factors that contribute to difficult behaviors will be reviewed. The importance of helping parents identify priorities for behavior change will be emphasized and strategies for counseling parents to help their children increase desired behaviors will be described.

Notions About Potions: A Product Review
N
12:15 PM - 1:15 PM
Moderator: Sue Purdie, BSN, RN
Speakers: Glen Roy, RN; Sue Kovats-Bell, RN, BSN

This session is a review of current factor products and antifibrinolytics. It will include a review of factor products on the market today with a discussion and comparison of their molecular structure, FDA-approved indications, half-life, storage requirements and reconstitution devices. We will also present a review of antifibrinolytics, including the use, dosing, FDA-approved indications and contraindications.

Rap Sessions
CNF V4W
12:30pm-1:30pm

• New Families
  Facilitator: Janet Barone
• LGBT
  Facilitators: Sean Jeffrey; Philip Smith
• Women with Bleeding Disorders
  Facilitator: Danielle Schwager
• Spanish Families
  Facilitator: Dennis Penning
• Young Adults
  Facilitators: Alexandra Johnson; Samantha Jankins
• Adult Men
  Facilitator: Tim Wicks
• Inhibitors
  Facilitator: Sonji Wilkes
• Partners & Spouses
  Facilitator: Robin Bratton-Bias

Roundtable: Fundraising
CS
1:15pm-3:00pm
Speakers: Michael Craciunoiu; Mary Ann Ludwig; Judi Smith; Danielle Leitner Baxter; Jeremy Griffin; Cheryl Baun

Chapter leaders, you are invited to attend this interactive roundtable session in which you will have the opportunity to visit two of three round tables for 45 minutes each. Topics include: Steps to Planned Giving; Building an Effective Individual Giving Program; and How to Move Donors to Become Active Chapter Participants.

Head, Shoulders, Knees & Toes: The Pros and Cons of Protective Devices
CNF
1:30pm-2:30pm
Speaker: Kristen Jaworski, RN, BSN, CCRC

Join us for this session where we will discuss safety equipment for daily activities for children with bleeding disorders and the ability of safety measures to ultimately prevent bleeding episodes. We will focus on the pros and cons of protective equipment and how to make the best decisions for your family using MedicAlert® guidelines. How important is MedicAlert identification? What is the best safety plan for your child? Can bleeds be prevented? Come to this session to find out!

Es un Asunto de Familia: Trabajando Juntos para crear un Ambiente Positivo de Familia
CNF
1:30pm-2:30pm
Moderator: Marisela Trujillo, LMSW
Speakers: Dave Robinson, PhD; Guillermo Campillo

Durante esta sesión nos concentraremos en cómo la cultura afecta a las familias con una enfermedad crónica y cómo superar el estigma de un trastorno de hemorrágico para que no afecte a su hijo. Vamos a discutir cómo las parejas pueden trabajar juntos como un equipo y involucrar a la familia extendida como ayudantes. Al final de la sesión aprenderá técnicas sobre cómo trabajar más eficazmente juntos como una familia para hacer frente a los estresores de un trastorno de sangrado.

Body Image & Intimacy Issues for Women with Bleeding Disorders
CNF V4W
1:30pm-3:00pm
Moderator: Patrice Thomas, MS, MSW
Speaker: Karen Boyd, LMSW, ACSW; Ellen Kachalsky, LMSW, ACSW

This session is for women only and will include a frank discussion on how a bleeding disorder affects body image, self-esteem and intimacy with others. We invite all attendees to speak openly about the challenges they face. By the end of the session, participants will understand the relationship between self-esteem, body image and sexuality; learn tips for effective communication with partners; and achieve overall greater self-acceptance.

Aging with Hemophilia: Embracing Your Inner Geezer
CNF
1:30pm-3:00pm
Moderator: Randall Curtis, MBA
Speakers: Patrick Fogarty, MD; Nigel Key, MD

This session will focus on health issues that affect older hemophilia patients and the evolving nature of comprehensive care. We will discuss cardiovascular disease; rheumatological diseases such as gout, arthritis and bone disease; cancer screenings; and orthopedic referrals. By the end of the session you will learn the symptoms of age-associated health conditions and how you can coordinate with your HTC and other providers to get the resources you need.

Nurses Luncheon—Be Our Guest
N
1:30 PM - 2:45 PM
Moderator: Susan Hunter, RN, BSN
Speakers: Mary Lou Cygan, MSN, RN, CPNP; Val D. Bias; Jim Munn, RN, MS

Be our guest as we reflect on our roles as HTC nurses and celebrate our achievements. Speakers include Val D. Bias, CEO of NHF, and Jim Munn, Vice Chair of WFH. Special recognitions and presentations will include, but are not limited to, the 2012 NHF Nurse of the Year and the recipient of the 2011-2012 NHF Nursing Excellence Fellowship

Physical Therapists Luncheon - Updates
PT
1:30 PM - 2:45 PM
Moderator: Marc Gilgannon, PT

This session will review on-going research related to the PT Excellence Fellowship award which is granted annually through the NHF. The PTWG will provide an update on the working group operational guidelines, membership and projects in progress, as well as discussing updates to the PT Treatment Guidelines. Additionally, discussion will also include updates on PT related outcome measures utilized with individuals with bleeding disorders.

Social Workers' Lunch: Identity and Social Relationships in Women with Moderate and Severe Hemophilia A and B and Other Bleeding Disorders
SW
1:30 PM - 2:45 PM
Moderator: Laurel J. Pennick, MSSW, LCSW
Speaker: Jacqueline Lefkowitz, PhD, LCSW-R

During the lunch, Jacquie Lefkowitz will be presenting her findings from her Social Work Excellence Fellowship, "Women with Severe and Moderate Hemophilia A and B and Other Bleeding Disorders: A Grounded Theory Study."This study explored how living with moderate or severe hemophilia or another rare congenital bleeding disorder influences female identity formation and social relationships. It examined how having one of these bleeding disorders affects women’s relationships with family, friends, co-workers and other individuals. It considered the influence of gender upon a woman’s experience of living with a bleeding disorder. It asked women whether they feel any sense of stigma, or “differentness” from other individuals as a result of having a bleeding disorder. Additionally, it explored how women with bleeding disorders characterize their “illness careers,” including the meaning they have imputed to their disorder and the effect they feel it has had on their lives. Lastly, the study asked these lifelong “patients/consumers” of healthcare about their characterization of their relationships with their healthcare providers. It explored whether they feel physicians and other providers understand and empathize with their experiences. It examined how their role as recipient of healthcare services further impacts on their identity and social relationships.

Remembrance & Celebration of Life
CNF CS
2:00pm-3:00pm
Speaker: Greg McClure

This gathering provides an opportunity for our entire community to reflect upon, remember and celebrate our loved ones, our heroes, both living and departed. Take some time to consider our collective history and look forward to a better future. Everyone is welcome.

Insurance & Advocacy
CNF
3:00pm-5:00pm
Speakers: Johanna Gray, MPA; Ellen Riker; Michelle Rice

NHF’s DC consultants will provide an update on the political climate post election, its potential impact on health reform implementation and what it means to you as a consumer. In addition, there will be an interactive workshop illustrating how to use the Personal Health Insurance Toolkit to assist you in evaluating your health plan options.

Do I Have to Be on the Team? Benefits and Challenges of Sports Participation
CNF
3:00pm-4:00pm
Speaker: Jeffrey Kallberg, PT

This session is geared toward families of children with bleeding disorders and teens who have either chosen to participate in sports or who have chosen a different interest, such as music or art. We will discuss the physical pros and cons of sports and the psychological pros and cons of belonging to a team, including choosing not to participate.

Sponsored by Baxter

Working with Chapters: Lessons Learned from Dave
CS
3:00pm-4:00pm
Speaker: Dave Sternberg

Through NHF’s Board Retreat grants, NHF board member Dave Sternberg has been working with chapters for approximately one year. There are some trends he has observed with the chapters. What are the trends? What are the solutions for the trends? What are some of the great things he has seen? Join us to hear Dave’s perspective on “chapterland.”

Sharing and Caring: Case Studies on VWD
N
3:00 PM - 5:00 PM
Moderator: Mary Lou Cygan, MSN, RN, CPNP
Speakers: Betsy Koval, RN, BSN; Laura-Jean Siggens, RN, MSN, CPN; Angela Lambing, RN, NP; Claudia Lupia, RN, BS, OCN; Kerry Hansen, RN; Charmaine Biega, RN

During this session we will focus on von Willebrand Disease care for a variety of patients seen at the HTC. We will address approaches that have been successful in dealing with diverse patient populations and look at unique scenarios. By the end of the session we will be better equipped to offer specialized care to our VWD patients.

Upper Extremity Orthopedics and Intervention
PT
3:00 PM - 5:00 PM
Moderator: TBD
Speaker: Mauricio Silva, MD

During this session we will focus on the evaluation of hemophilic arthropathy of the elbow, including the general signs and symptoms, the physical findings, the evaluation tools and the medical and surgical treatment options. Special emphasis will be placed on the evaluation of the available imaging tools (radiographs, ultrasound, CT scan, MRI) and on the available surgical options for advanced hemophilic arthropathy of the elbow. Nonsurgical alternatives will also be discussed.

Effective Social Work Strategies for Engaging the African-American Male
SW
3:00 PM - 5:00 PM
Moderator: Debra Honig, MSW, LCSW
Speaker: Waldo E. Johnson Jr., PhD, MSW

In this session, participants will focus on the role and importance of historical and contemporary social statuses that shape medical and public health professional individual and institutional practices with African-American males. We will explore how these racialized and social class experiences, coupled with American male cultural notions and experiences with public and private social welfare and social service institutions as both patients and clients, frame the context for examining African-American male marginalized engagement and their subsequent distrust/mistrust of the medical and public health professions. In addition, the presentation focuses on how male help-seeking behavior and culture within the disproportionately impoverished African-American community influence engagement with social welfare and social service institutions.

The research presentation and Q & A period will contribute to the development of a trusting and culturally competent service framework for engaging African-American males in medical treatment, public health and social service provision, and patient adherence and management.

Beyond the Label: Carriers & Women with Mild Hemophilia
CNF V4W
3:15pm-4:15pm
Moderator: Danielle Schwager
Speakers: Joanna A. Davis, MD; Lynne Szott, RN, CCM

For female carriers, dropping the term “symptomatic carrier” and picking up the label “mild hemophilia” can be more complicated than it seems. Join us for a panel discussion about the benefits and challenges of labels. Topics will include implications of labels and diagnosis in terms of insurance, medical care and self-identity.

How Spiritual Diversity Affects Your Healthcare Decisions
CNF
4:00pm-5:00pm
Speaker: Greg McClure, MA, MS, LSW; Debra Schear

During this session, we will focus on the role spirituality has in our healthcare decisions. We will discuss the definition of spiritual diversity, the ways in which to work with healthcare providers while staying true to beliefs, and your rights to spiritual sensitivity in the healthcare setting. By the end of the session you will learn that spiritual diversity can impact your healthcare decisions in a positive way.

Tackling Financial Statements
CS
4:00pm-5:15pm
Moderator: Dawn Rotellini
Speaker: Jordana Zeger, CFO NHF

This session is for Chapter Staff and Board Members who are not CPAs and do not speak "Accounting Language". It's really about understanding the financial statement for a non-financial person and how to explain to your board, donors, members when needed.

Please Tell Me Who You Are: Identifying Different Roles in the Hospital Setting
CNF
5:00pm-6:00pm
Speaker: Kristen Jaworski, RN, BSN, CCRC

During this session we will focus on the variety of healthcare providers families with a bleeding disorder will encounter and give effective methods on how to best communicate with them. A handout will be provided on the common healthcare provider acronyms. We will define “need to know” information and role play an exercise on how to effectively advocate for your care when dealing with different providers. You will leave the session with a list of phrases that will aid in conversations with healthcare providers and a basic template of “need to know” information. Best of all, you will have increased confidence in working with your healthcare team.

I’m More than Just a Caregiver
CNF
5:00pm-6:00pm
Speaker: Diane Standish, LSW; Robin Bratton Bias; Devi Tejiram; Dawn Rotellini

As a caregiver, do you ever experience burnout or loss of identity? During this session we will focus on caregiver identity, how relationships are affected by the caregiver and the importance of maintaining balance in multiple roles. We will look at research findings about caregiver identity and hear anecdotal experiences from our panelists. You will learn ways to monitor caregiver burnout, and get suggestions and tips on maintaining balance and nourishing healthy relationships.

Sponsored by Kedrion

Mechanics of Physical Intimacy: Managing Pain & Joint Limitation in Sexual Relationships
CNF
5:00pm-6:00pm
Speaker: Alice Anderson, PT, DPT, PCS

During this session we will focus on the biomechanics of sexual activity for individuals with chronic pain and/or limitations in joint function due to bleeding disorders. We will discuss possible expansion of one’s view of sexuality, principles of positioning to promote intimacy and comfort, and pros and cons of common positions assumed during physical intimacy. We will list options for intimate exploration, describe three principles of optimal positioning and at least two methods of modifying posture to increase comfort while participating in intimate activity, and describe potential benefits and drawbacks to common positions assumed during intimate interaction.

Thank You! Thank You! Donor Stewardship for Chapters
CS
5:15pm-6:15pm
Moderator: Dawn Rotellini
Speaker: Carol Simonetti

Do you often wonder why donors stop providing support, why volunteers stop giving their time, and how to create loyalty and repeat giving to your organization? Join us for this session where we will learn how to say “thank you” to donors in a meaningful way. What are other chapters currently doing to say thank you to donors? Do you have a donor stewardship program in place? How do you create one? In this session, you will find out the answers to these questions and more. Even though saying “thank you” is the most underrated, least emphasized part of development, we can change that culture!

Sugar and Spice and Not Everything Nice: Complementary and Alternative Medications (Including Herbals)
N
5:15 PM - 6:15 PM
Moderator: Susan Hunter, RN, BSN
Speaker: Miguel A. Escobar, MD

During this session the audience will learn about complementary and alternative medicine (CAM), including the most common CAM practices in the USA and their costs. You will learn about the effects and mechanism of action of the most popular herbs and how they can affect individuals with bleeding disorders. The role of healthcare providers and CAM will also be discussed.

PT Game Show
PT
5:15 PM - 6:15 PM
Moderator: Marc Gilgannon, PT
Speaker: Marc Gilgannon, PT

Designed for the Physical Therapist working with individuals with bleeding disorders, this session will challenge your knowledge base thru a fun filled, participation based format. The "PT GAME SHOW" will question the audience thru an interactive format and provide educational information on various topics related to physical therapy, sports participation, and bleeding disorders. The session promises to be educational, entertaining, and a great way to interact with your colleagues while reviewing the latest information at the annual meeting. Come ready to participate and collaborate with your fellow PT's in this fun way to end your day!