Page 4 - HFA_Dateline_2017_Q2_Summer

EXECUTIVE CORNER
Dear Community Members,
A s we enjoy the last few weeks of summer warmth before
the chill of autumn creeps in, a new school year is upon
us! The back-to-school season is always filled with many con-
flicting emotions, as we work to get the kids into a consistent,
daily routine. For many parents, especially those with children
attending school for the first time, early autumn can be espe-
cially stressful. Fortunately, strategies and plans abound here
at HFA! I’m delighted to be able to share a useful tool, created
by HFA Programs team member Carrie Koenig, that will help
identify which type of strategy would best meet your child’s
needs at school.
Beyond the flow chart you’ll find in this issue of Dateline, the
HFA website is packed with resources I hope you and your
family will find useful. Our Back-to-School Toolkit includes a
customizable PowerPoint for you to use as a teaching tool for
your child’s school staff, along with a number of forms avail-
able for download. A Guide to Students with Bleeding Disor-
ders can serve as a starting point for discussions with school
staff about how best to address the unique healthcare needs of
your student. My Bleeding Disorder is a handy two-page docu-
ment that provides the basics about bleeding disorders and is
specific to your child. Experienced parents give this form to
their child’s primary teacher each year to keep in the classroom
so that it’s readily available to both the teacher and any sub-
stitute teachers the child may have in the course of a school
year. It’s also a helpful document to provide to coaches, scout
leaders, or anyone who has significant contact with your child
in the school setting.
Student resources on the HFA website aren’t just for K-12,
either. For college students and their parents, I’d recommend
the Been There, Done That: Tips from the College Bound
Students and Moms, which provides
much insight into the experience of
college students and parents alike.
In this issue I’m delighted to see
Alexandra Abreu Boria share her
personal experience in the piece
titled Storytelling for Advocacy.
4 Dateline Federation | Fall 2017
And speaking of back-to-school, Alexandra begins a Master’s
in Social Work program this fall at Columbia University and we
all wish her the best of luck in her studies!
It’s a busy time for us at HFA, and you’ll find Dateline burst-
ing at the seams with updates on programs and initiatives that
impact our community. The National AIDS Memorial Grove’s
dedication of the Hemophilia Memorial signifies a turning
point for our community. We have, for the first time, a public
memorial where family members who lost loved ones to HIV/
AIDS can go for remembering and healing. In this issue, Mir-
iam Goldstein, a member of our Outreach team, provides an
overview of HR 2077, a piece of federal legislation addressing
the practice of step-therapy. We hope you’ll contact your rep-
resentatives to encourage their support of this legislation. Also
in this edition, I’m thrilled to see the addition of our Sangre
Latina section, published entirely in Spanish!
You’ll read about the great work the Virginia Hemophilia Foun-
dation is doing, as we provide an Executive Director spotlight
on Kelly Waters. And Jill Packard, Executive Director of the
Hemophilia Alliance of Maine, offers a piece on the challenges
of living rurally with a bleeding disorder. Having the support
of Member Organizations like these in initiatives and projects
such as Dateline strengthens our community.
I hope you enjoy this issue as much as I have. I continue to be
inspired by the great work of our community, and the passion
and vigor that everyone invests into the work we do.
Warm regards,
Tracy Cleghorn
Board Chair
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