Page 2 - HFA Dateline 2014 Q1 Spring

EXECUTIVE CORNER OFFICERS Matthew T . Compton, President Tracy Cleghorn, Vice President Rocky Williams, Secretary Dear HFA Friends and Family, Douglas Hartsough, Treasurer Paul Brayshaw, Past President hank you for taking the time to invest in reading the first edition of Dateline PUBLICATIONS COMMITTEE TFederation this year! We hope you get a lot out of this issue and that you Margie Yancey, Vice Chair keep reading throughout the year . Jill Williams Barbara Chang 2014 is a milestone year for HFA . This year we celebrate our 20th anniversary Lori Long and are deeply honored to still be here serving you! When a milestone like this comes along, reflecting on the years gone by is very natural . Our past is not an MISSION easy one; we were founded during some very difficult times in our community The Hemophilia Federation of America to provide voices for families who were not being heard . Our mission to assist is a national non-profit organization that assists and advocates for the and advocate for families with bleeding disorders remains the heartbeat of the bleeding disorders community . organization . Dateline Federation is published four times As time passes, our community’s need for awareness remains the same . Issues a year by the HFA, 820 First St ., NE, Suite 720, are different today than they were in the past, but issues and concerns remain . Washington, DC 20002 . Toll Free Number: 800 .230 .9797; Local Number: 202 .675 .6984; “The time for action is now. It’s never too late to Fax: 972 .616 .6211 . Requests for permission to translate and/or reprint contents of do something.” ~Antoine de Saint-Exupery Dateline Federation should be directed to the Editor at info@hemophiliafed.org. Dateline We do not have the worries of HIV and HCV contamination like our community Federation is available as a PDF file from the did in the 1980’s, however we must continue to monitor and fight for what we HFA website at www.hemophiliafed.org. need at all times . Access to the physicians that care for our family’s and the phar- macies that provide our medication is not assured, and specialty tiers are placing DISCLAIMER high cost burdens on some families . As many new products emerge and begin to The material provided in Dateline Federation change the landscape of bleeding disorders medication, 30% of the hemophilia is provided for general purposes only . HFA does community are still forming inhibitors . The list goes on . not give medical advice or engage in the practice of medicine and recommends that you consult Frankly, there is a lot happening and we hope you are paying close attention to with your physician or local treatment center the changes and how they are impacting you and your family personally . At HFA, before beginning any form of treatment . we encourage you to be involved, proactive, and engaged! © 2014 Hemophilia Federation of America . All rights reserved . In an effort to keep bringing awareness of issues at hand, HFA pledges to continue to bring tools and resources like toolkits, issue briefs, Dear Addy, and other support through our advocacy and programming activities . Let’s keep CONTRIBUTORS working together! Special thanks to HFA community members, staff and speakers who Warm regards, contributed to this issue. Rich Pezzillo, Communications Director Shelly Mattson, Editor Kristin Mitchell Design, Graphic Design Michael DeGrandpre, Graphic Design Gina Sierra, Photographer Matthew T. Compton Melissa Lathlean, Photographer Board President Katie Verb Lauren Neybert Joe Walsh Lori Long Jill Packard Ron Mell Kimberly Haugstad, MBA Matt Porges Executive Director Ashley Druckenmiller 2 Dateline Federation | Spring 2014