The Power of One
Awareness Month is here! To kick it
off, here’s a post from Katie Kroner, PHA’s Director of Advocacy and Awareness.
As you’ll see, there are Awareness Month activities going on around the world.
I hope you’ll add your voice to the conversation!
This year’s
Awareness Month theme, The Power of One, reminds me of lots of remarkable
things about the PH community. We’ve worked together to end isolation, growing
from a community of a few to a community of thousands. Our advocacy has brought
PH to the attention of the medical and pharmaceutical communities, taking us
from zero treatments to nine—more than only two of the 7,000 identified orphan
diseases. Most of all, The Power of One
reminds me of the everyday heroes — each of you – without which we could not be
where we are.
The first National PH Week was held
November 2-8, 1997. PHA’s historical records note some important milestones
during those early Awareness Weeks including growth of the support group
network to 35 groups in 1998. (We now have 235.)
Since 1997, PH Week has become PH
Awareness Month and reaches across the country and around the word but its
individual people, growing ideas into successes, that still make the PH
community what it is. Here are just a few of the big ideas that will make
Awareness Month 2011 a huge success:
·
Each year, the PH community requests Awareness Month
Proclamations from their local elected officials, but when Doug Taylor issued a
challenge for some state (any state!) to beat South Carolina’s record of 11
proclamations in one year, he started something big. On Facebook
alone, 98 people have responded to Doug’s challenge. Perry Mamigonian has
inspired Support Group Leaders across California to take on the challenge, but
proclamations are also coming in from Maryland, New Jersey, Tennessee,
Nebraska…you get the picture.
·
November boasts nearly twenty special event
fundraisers aimed at supporting PH research and PHA programs.
Organizers took their unique ideas and passions and turned them into community
endeavors. Nicole Cooper is turning her first-time event vision into a reality
with the Vision of Hope Gala in
Maryland on November 12. Other first time events include a Zumbathon and chili
cook-off. Many organizers have multiplied their impact by connecting with the
media to promote their event and raise awareness of PH in their communities.
·
On November 1, more than 400 people used Facebook
and other online tools to spread the word about pulmonary hypertension
worldwide. One caregiver from Germany wrote to say that he has posted a PH web
banner on his software blog, which receives about 2,000 visitors a day. That’s
the power of one to raise awareness about pulmonary hypertension.
Thanks, Katie! Great work. Day Two of Awareness Month and it's full steam ahead!
ReplyDelete...and thank you for all you do, Perry. Go, go on the Proclamation Challenge!
ReplyDeleteI'll make sure Katie sees your note.
Rino