Wednesday, October 31, 2012

Awareness Month Voices from the PH Community (#2)...

As we begin Awareness Month, I'm posting this video from Shari Caffrey who speaks in her own words about why she founded Taylor's Wish (registration for the 2013 event is not yet open) for PH awareness and support of PHA programs.

This is number 2 in an Awareness Month series on the Empowered by Hope blog.

You can make a difference, too.

Tuesday, October 30, 2012

Awareness Month Voices from the PH Community (#1)...

As promised on my earlier Awareness Month blog, I'll be posting stories of inspiration and awarenss throughout Awareness Month.

Here's a note from a PHA member in Pennsylvania, Merle Reeseman.  Can one person make a difference?  It's the only way a difference can be made.


I just received a call from an aide to State Representative Carolyn Dykema stating that she is in the process of having November named Pulmonary Hypertension Awareness Month in the Commonwealth of Massachusetts.  They have contacted the office of the Governor and just keeping me up dated.

My brother and sister-in-law visited just over a week ago and my sister-in-law attended the Health Expo that Representative Stevenson puts on each year and I have a "table".  That was also the day he presentented me with the proclamation from the Commonwealth of Pennsylvania about November being named PH Awareness Month in PA... My brother asked for a copy of it and made an appointment with Rep Dykema. :D

I had a very nice conversation with the aide and Rep Dykema will also speak to the Congressperson and ask for co-sponsorship for HR 1810 (my brother is also working on that).

Just had to share the news.  Another "WELL, HOLD ME BACK"


Here comes PH Awareness Month...

Every year PH Awareness Month becomes busier, with more opportunities to help our families, friends and neighbors learn more about pulmonary hypertension…but where did Awareness Month come from, how did it get started?
Earlier today I called Pat Paton, a PHA co-founder, to hear what she had to say on the subject.  Pat told me

…before there was an official Awareness Month or even Awareness Week, there were a few of us who would set up tables in hospitals and shopping centers.  PHA – or UPAPH as we were known then – would send brochures.  That was all we had.  Since we didn’t have much in the way of materials, we worked hard to get interviews with our local newspapers and TV stations.

You have to remember that all of this was very local, with activities taking places in the few communities where we had active members.  Even so, when we did these activities, we noticed that the number of callers to our 800 number, the telephone support line, picked up and we heard from people in the area with the disease who had not previously been connected to us.  While the numbers were not great, when we had 100 members and we heard from 25 new people, well, we thought that was pretty good!  

Today, PHA’s reach for Awareness Month is throughout the U.S. and beyond.  We have much more information to offer and plans and suggestions for our members and friends in getting the word out. (Here are 10 in print ...or, if you like voice and slides, take a look here!)
The essential element, though, is YOU.  Whether spreading PH awareness in person or electronically, our reach is only as large or as small as the number of patients, family members and medical professionals who are willing to invest time and talent in making a difference.

One way (actually 16 ways) to make that difference is to help launch Awareness Month with

It’s a day of worldwide action online. PHA has made participating easy with plenty of ideas and sample messages for you to use. Even without social networking, you can share through email or by posting your story on our website.
So, you’re invited to help kick off Awareness Month on November 1 and continue on expanding awareness of PH.  Particularly this year, when our national conversations are so difficult, it’s important to let our fellow citizens know we exist, are working hard for positive change and need their interest and support.
Here’s a note that came in while I was writing this blog.  It shows the difference one person can make. 

Each of us can be that one person.

I'll try to post stories of inspiration and awareness on this blog throughout Awareness Month.

Monday, October 8, 2012

Walking in the sun...

In mid-September I flew to Colorado for the Third Annual Colorado PH 5K Run Walk for PHun.  It was organized by Deb McCollister and Robin Hohsfield, both on the PH team at the University of Colorado Denver, and Beth Coleman from the PH Center at Colorado Childrens' Hospital and supported by  a host of great volunteers, including the doctors from both Centers, folks like Dave Badesch, Dunbar Ivy and Todd Bull.

It was another terrific event with tremendous spirit, as can be seen from the video the organizers recently sent. (I never saw so many clown in one place!)

Robin Hohsfield