NHF12-110

Head, Shoulders, Knees & Toes: Pros and Cons of Protective Devices

Speakers: Kristen Jaworski, RN, BSN, CCRC

In this session, we discuss safety equipment for daily activities for children with bleeding disorders and the ability of safety measures to ultimately prevent bleeding episodes. We 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? Listen and find out!

MP3

$10.00

$10.00

NHF12-107

Management of Sports Participation

Speakers: Cindy Bailey, PT, DPT, OCS, SCS; Sherry Herman-Hilker, PT, MS; Janice Kuhn, RN, MPH; Steven Pipe, MD; Moderator: Christine Rowell, MSPT

This session provides a general overview of teenagers’ physical attributes, changes and challenges in sports training and participation. Hear about the need for communication between parent, coach and athlete for frequency and intensity of workouts. 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 also hosts 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.

MP3

$10.00

$10.00

NHF12-123

How Spiritual Diversity Affects Your Healthcare Decisions

Speakers: Greg McClure, MA, MS, LSW; Debra Schear

In this session, we focus on the role spirituality has in our healthcare decisions. We 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. Learn that spiritual diversity can impact your healthcare decisions in a positive way.

MP3

$10.00

$10.00

NHF12-212

A Taste of PEP: Parents Empowering Parents

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 strengthen their behavioral management and communication skills. The session is taught by a trained PEP team including a parent peer, nurse and social worker.

MP3

$10.00

$10.00

NHF12-104

Your Family, Our Future: Understanding the Role of Genetic Testing in Hemophilia

Speakers: Marion Koerper, MD; Diane Aschman MS; Barbara Konkle, MD; Moderators: Glenn Pierce, MD, PhD, Chief Medical Officer, Biogen Idec Hemophilia

This session introduceS 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 offers 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 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.

MP3

$10.00

$10.00

NHF12-210

Been There, Done That! Raising Parents When you Have a Bleeding Disorder

Speakers: Michele Cecil; Brent Movitz; Jozef Zwier; Moderators: Jennifer Maahs, MSN, PNP; Tonya Hegwood, MSW, LCSW

A panel of young adults with bleeding disorders share childhood experiences of their parents’ adjustment to their diagnosis. We 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 conversation for all will reassure new families that life with a bleeding disorder need not be as frightening as the initial diagnosis.

MP3

$10.00

$10.00

Subtotal

$60.00