Page 4 - HFA Dateline 2017 Q1 Spring

EXECUTIVE CORNER

Dear Community Members,

have lived in Virginia for all of my life. While I do love my in some of the examples we’ve provided and think of ways you
I home state, I am often jealous of families that have lived all can contribute to the project. While you might not be an expert
over the United States. As you can imagine, that jealousy rears on everything related to bleeding disorders, you are definitely
its ugly head toward the end of winter when my envy of those an expert on your, or your child’s, condition and the needs of
living in Florida is at its highest! It’s taken me more than 40 your family, and that’s what is most important! Tell your story!
years to decide that I’m officially not a cold weather person. With your help, we can do greater good for the community.
March can be a wild time in Virginia, with everything from a In this issue, you’ll find other pro-advocacy resources, too. Don’t
snowstorm to a heat wave all in the same week. But I’m always miss the Bleeding Disorders Awareness Month calendar (p. 16)
excited as March approaches because, crazy as it is, it means where we provide you with a daily action or fact throughout
spring in all its flowering beauty is right around the corner.
the month. I suggest hanging this on your refrigerator or by
Along with the beauty of spring, March provides an opportu- the door where you can easily access the excellent, and timely,
nity for our community to blossom as well: it’s Bleeding Dis- information. Josh Hemann’s retelling of the day his daughter,
orders Awareness month! Our social media channels become Kinzie, was chosen as the Kid Captain of a University of Iowa
chockful of information and educational opportunities, all football game will put a smile on your face (p. 19), as it did for
aimed at spreading awareness. My personal favorite is seeing me. The joy that she, and the entire family, felt that day is infec-
posted photos of people wearing their HFA T-shirts with the “I tious, and their presence on that playing field gave our com-
Love Someone with a Bleeding Disorder” graphic on the front. munity visibility to an audience who knew little about bleeding
What an easy way to start a conversation about bleeding disor- disorders. That’s advocacy—and a lot of fun—at work!
ders in your town, workplace, or even the supermarket.
Symposium 2017 is right around the corner, and I hope to see
Advocacy is a word that can make people nervous. That’s okay, you and your family at the event. If you can’t make it in person,
even I get overwhelmed by the thought of advocacy at times. be sure to follow along on our social media channels where our
When I hear the word, I immediately think of going into a high team will be sharing the great work taking place in Providence,
ranking government official’s office and talking about an im- RI.
portant issue while answering difficult questions when I might
not be fully confident in my answers. Scary! But, while this is Warm regards,
one form of advocacy, there are many much-easier ways for you
to make a difference.
Simply sharing your story can be an effective way of support-
ing the community. In this issue of Dateline, our Outreach Tracy Cleghorn
team offers information about a story bank collection initiative Board Chair
that we’ve launched (p. 24). I hope you’ll find some inspiration

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4 Dateline Federation | Spring 2017