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EXECUTIVE CORNER
Dear Reader,
W hen I attended Symposium for the first time more than
12 years ago it was in the capacity of a representative
on the board of directors. My local Member Organization was
looking for someone to fill the seat on the board and I saw it as
a good opportunity to immerse myself within the community.
I had little knowledge of the specifics of HFA’s work and felt
like I knew precious little about hemophilia as well. My son
Nicholas was just a few years old and my husband and I were
still trying to navigate our lives with a child with severe hemo-
philia. With no family history of bleeding disorders we had a
lot of learning to do. At that time Nicholas had already endured
several joint and soft tissue bleeds, had a port placed, and was
on prophylaxis. It was a whirlwind of a Symposium, and a trip
that redefined the next chapter in my family’s story.
As you enjoy this latest issue of Dateline, my role as the chair
on the board of directors has come to an end. After four terms
of serving in this capacity, two questions continue to whirl
around in my mind: how did this happen and where did the
time go? I’m not sure I know the answer to either, but I can say
that it’s been a tremendous blessing. I’m thrilled to see a group
of passionate and dedicated individuals has been voted on to
the board’s executive committee, with Josh Hemann as chair.
I’ve had the privilege of witnessing tremendous growth and
evolution at HFA over the last decade as my family, too, has
gone through its own metamorphosis. We’ve transitioned from
port to peripheral infusions and are gently moving Nicholas
towards self-infusing. He’s been going to sports practices by
himself and has even attended some sleepovers with friends.
Ah, teenagers! Through each of these milestones or transi-
tions, we’ve had a village of people supporting and champion-
ing us. Whether it’s reading the latest post on HFA’s blog from
a mom, talking with a dad going through a
similar situation, or Nicholas looking to
an older Blood Brother for suggestions
— we haven’t been alone.
4 Dateline Federation | Spring 2018
No matter which measurement you use, HFA has grown. With
48 Member Organizations currently in partnership, the scale
and reach of the great work we’re doing spans from coast to
coast. The Blood Brotherhood program continues to grow
while other groups of individuals are receiving attention and
services like never before through programs targeting dads,
moms, families, and caregivers. Spanish-language content is
reaching an underserved group of individuals, and people liv-
ing with vWD or rare bleeding disorders have access to unpar-
alleled programming and resources. Our policy and advocacy
work has moved beyond just federal issues as we also work
with Member Organizations to tackle state-level concerns
across the country. The Gears for Good fundraising bike ride
has grown to be one of our signature events, and just this year,
HFA was selected as a charity partner for the Marine Corps
Marathon in Washington, DC. We’ve even launched our own
research department with initiatives that are at the forefront of
patient-centered research.
Despite the growth, not everything has changed: I still don’t
enjoy public speaking! And, HFA continues to be the leading
voice and advocate for people living with bleeding disorders
in this country. You, the community, have always been, and will
always be, this organization’s focus, drive, and motivation.
Perhaps without even knowing it, you’ve done so much for
me and my family. I will be forever grateful to have had this
experience. It’s been my absolute pleasure. I look forward to
seeing you at Symposium next year in San Diego, CA as HFA
celebrates 25 years!
Gratefully,
Tracy Cleghorn
Past President
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