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EXECUTIVE CORNER OFFICERS
Tracy Cleghorn, President
1st Vice President: Scott Boling
2nd Vice President: Mark Antell
Dear HFA Friends and Family, Douglas Hartsough, Treasurer
Rea Watson, Secretary
W elcome to summer! Hopefully, wherever you are reading this, you are PUBLICATIONS COMMITTEE
Matthew Compton, Past President
enjoying some beautiful weather and time off from work!
Recently, the hemophilia community gathered in Tampa, Florida for our annual Margie Yancey, Vice Chair
Jill Williams
Symposium, with the theme Honoring Our Past, Building Our Future — an ap- Barbara Chang
propriate theme, since we are celebrating our 20th anniversary. Symposium has Lori Long
quite often been called a family reunion, and this year was no different.
MISSION
I was introduced to this very large, loving family at my first Symposium six The Hemophilia Federation of America
years ago. At that time, it was less than two years since our son Nicholas was is a national non-profit organization
diagnosed with severe hemophilia. Nicholas received a bleeding disorder that assists and advocates for the
diagnosis we knew nothing about. During his young life, he has endured bleeding disorders community.
several bleeds, had a port implanted, and began prophylaxis. When we came Dateline Federation is published four times
to Symposium, we were still settling into the diagnosis and what our life would a year by the HFA, 820 First St., NE, Suite 720,
entail. Over these past six years, we’ve all grown and learned so much, and our Washington, DC 20002. Toll Free Number:
bleeding disorders family has continued to grow. 800.230.9797; Local Number: 202.675.6984;
Fax: 972.616.6211. Requests for permission to
This year, we had a wonderful addition to Symposium: a first-of-its-kind translate and/or reprint contents of
historical journey over the past seventy years of hemophilia. Two rooms were Dateline Federation should be directed to the
filled with easy-to-read and follow timeline boards dating back to the 1940s, Editor at info@hemophiliafed.org. Dateline
binders of documents, hundreds of community resources, the Ryan White and Federation is available as a PDF file from the
Ricky Ray AIDS Quilt, and hundreds of community photos dating back to the HFA website at www.hemophiliafed.org.
1950s. This room evoked powerful emotions from new and long-participating
community members alike. I commend the committee that worked long and DISCLAIMER
hard on bringing this room to us. The material provided in Dateline Federation
is provided for general purposes only. HFA does
Reflecting on our community’s past and future as the mother of a young son not give medical advice or engage in the practice
with severe hemophilia, I often consider how to best educate my son. Honoring of medicine and recommends that you consult
Our Past, Building Our Future is a thought provoking statement; both past and with your physician or local treatment center
before beginning any form of treatment.
future are equally important. It’s my job as a mother and community member
to find the balance between the two, and share that with him. Our past is so © 2014 Hemophilia Federation of America.
All rights reserved.
significant that I feel I would be doing an injustice to him and his blood
brothers that sacrificed so deeply if I didn’t educate him on the history. At the
same time, my son and his young blood brothers and sisters are the future of this CONTRIBUTORS
community. Special thanks to HFA community
members, staff and speakers who
As the newly elected president of the Hemophilia Federa- contributed to this issue.
tion of America, I ask you to join me by encouraging our Rich Pezzillo, Communications Director
children to do the same — Honor Our Past, and Build Shelly Mattson, Editor
Our Future! Our children will inherit our Kristin Mitchell Design, Graphic Design
history, and with our help, they will become Michael DeGrandpre, Graphic Design
Gina Sierra, Photographer
strong advocates for the bleeding disorders Michael Birmingham
community. Sarah Watson
Warm regards, Ashley Chan
Sonji Wilkes
Mickey Price
Elaine Chan
History Room Advisory Committee
Tracy Cleghorn
Board President
2 Dateline Federation | Summer 2014
Tracy Cleghorn, President
1st Vice President: Scott Boling
2nd Vice President: Mark Antell
Dear HFA Friends and Family, Douglas Hartsough, Treasurer
Rea Watson, Secretary
W elcome to summer! Hopefully, wherever you are reading this, you are PUBLICATIONS COMMITTEE
Matthew Compton, Past President
enjoying some beautiful weather and time off from work!
Recently, the hemophilia community gathered in Tampa, Florida for our annual Margie Yancey, Vice Chair
Jill Williams
Symposium, with the theme Honoring Our Past, Building Our Future — an ap- Barbara Chang
propriate theme, since we are celebrating our 20th anniversary. Symposium has Lori Long
quite often been called a family reunion, and this year was no different.
MISSION
I was introduced to this very large, loving family at my first Symposium six The Hemophilia Federation of America
years ago. At that time, it was less than two years since our son Nicholas was is a national non-profit organization
diagnosed with severe hemophilia. Nicholas received a bleeding disorder that assists and advocates for the
diagnosis we knew nothing about. During his young life, he has endured bleeding disorders community.
several bleeds, had a port implanted, and began prophylaxis. When we came Dateline Federation is published four times
to Symposium, we were still settling into the diagnosis and what our life would a year by the HFA, 820 First St., NE, Suite 720,
entail. Over these past six years, we’ve all grown and learned so much, and our Washington, DC 20002. Toll Free Number:
bleeding disorders family has continued to grow. 800.230.9797; Local Number: 202.675.6984;
Fax: 972.616.6211. Requests for permission to
This year, we had a wonderful addition to Symposium: a first-of-its-kind translate and/or reprint contents of
historical journey over the past seventy years of hemophilia. Two rooms were Dateline Federation should be directed to the
filled with easy-to-read and follow timeline boards dating back to the 1940s, Editor at info@hemophiliafed.org. Dateline
binders of documents, hundreds of community resources, the Ryan White and Federation is available as a PDF file from the
Ricky Ray AIDS Quilt, and hundreds of community photos dating back to the HFA website at www.hemophiliafed.org.
1950s. This room evoked powerful emotions from new and long-participating
community members alike. I commend the committee that worked long and DISCLAIMER
hard on bringing this room to us. The material provided in Dateline Federation
is provided for general purposes only. HFA does
Reflecting on our community’s past and future as the mother of a young son not give medical advice or engage in the practice
with severe hemophilia, I often consider how to best educate my son. Honoring of medicine and recommends that you consult
Our Past, Building Our Future is a thought provoking statement; both past and with your physician or local treatment center
before beginning any form of treatment.
future are equally important. It’s my job as a mother and community member
to find the balance between the two, and share that with him. Our past is so © 2014 Hemophilia Federation of America.
All rights reserved.
significant that I feel I would be doing an injustice to him and his blood
brothers that sacrificed so deeply if I didn’t educate him on the history. At the
same time, my son and his young blood brothers and sisters are the future of this CONTRIBUTORS
community. Special thanks to HFA community
members, staff and speakers who
As the newly elected president of the Hemophilia Federa- contributed to this issue.
tion of America, I ask you to join me by encouraging our Rich Pezzillo, Communications Director
children to do the same — Honor Our Past, and Build Shelly Mattson, Editor
Our Future! Our children will inherit our Kristin Mitchell Design, Graphic Design
history, and with our help, they will become Michael DeGrandpre, Graphic Design
Gina Sierra, Photographer
strong advocates for the bleeding disorders Michael Birmingham
community. Sarah Watson
Warm regards, Ashley Chan
Sonji Wilkes
Mickey Price
Elaine Chan
History Room Advisory Committee
Tracy Cleghorn
Board President
2 Dateline Federation | Summer 2014
