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.
Wednesday, October 31, 2012
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.
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.
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"
Merle
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.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
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
Sunday, September 30, 2012
The first pediatric PH research fund is opening its doors…
In little more than a decade and a half, we have seen incredible growth in the field of pulmonary hypertension. We have gone from no treatments to nine, to being a disease of little notice in the medical community to one with great and growing educational structures, from hopelessness to hope.
It is now time to bring that same progress to pediatric
PH. Opening the doors for the RobynBarst Pediatric Research and Mentoring Fund is an early and essential step.
Here is an updated version of the note I sent to PHA’s Board
and staff about a week ago …
On Saturday evening September 22 at about 7:00pm Pacific, Carl Hicks
announced that the Robyn Barst Pediatric PH Research and Mentoring Fund reached
its $1,000,000 stage 1 goal. The doors for
the first ever pediatric research fund for PH are now opened!
While the goal was reached at the at the Thirsting for a Cure event in
Oregon, it was the culmination of a two year communitywide effort. We owe a
great deal of thanks to a great many people…to the Cardiovascular Medical
Research and Education Fund (CMREF) for their leadership grant, to Steve White
and his family for their generous pledge to get us on our way, to the Linnens,
Srinivasans and MacDonalds for their special generosity, to Actelion and United Therapeutics for their high-level sponsiorships for Thirsting for a Cure, to many other donors,
to Carl Hicks whose impatience to get us to our goal led to the event that brought
us over the top and to Actelion CEO, Shal Jacobovitz who called Carl just
before the event and committed to fill any gap to get us to the $1,000,000
target for activation of the Fund.
Most of all, we owe Dr. Robyn Barst for her work in pulmonary hypertension
as a clinician, a researcher and builder of the field, especially in the once
lonely area of pediatric PH. Robyn’s
generous lead gifts allowed us to establish the Fund and move it from dream to
reality in little more than two years.
Her vision in including a mentoring element will help ensure the development
of future pediatric PH experts. Robyn,
we are grateful.
Dr. Serpil Erzurum, chair of PHA’s Research Committee recently led a
meeting to plan for anticipated implementation of Barst Fund activities. Based on that meeting, we contacted and
rapidly reached agreement with the American Thoracic Society for grant management
services. We will now begin to work with them to establish program guidelines
based on our existing proposal, set application and review deadlines and make
our first grants.
In closing, Saturday’s event was a lot of fun with a lot of wine at the
Alexana Winery in Newberg, Oregon. Mike
and Bonnie McGoon, John Hess, Betty Lou Wojciechowski (and family), Mary Jan
Hicks, Bruce and Rita Brundage, Gail and
Denis Hayes, Gareth Gwyn and many others joined us, including Charity Sunshine
who sang for the gathering. The Portland
Metro Support Group did great work at the registration table and beyond to make
the event the success that it was. Carl
got a lot of people driving happily down a long gravel road to get to this
event…and more happily back. Well done.
The Robyn Barst Pediatric PH Research and Mentoring Fund
has gone from dream to reality. Now it’s
time to leverage that reality to growth of the pediatric PH field – for the
good of the kids and their families living with this disease…today and
tomorrow.
Wednesday, September 5, 2012
The meaning of events - part 2
It included a video filmed at the Power for PH PHun Walk for a Cure in Edison, NJ.
Today, I received a comment on that blog asking for information about the Country Happenings PHun Walk that took place around the same time I wwas writing that blog.
On July 28, PH patient Vicky Turner hosted the Inaugural Country Happenings PHun Walk in her rural town of Brant, Michigan. Vicky first approached her community with her idea in December of 2011 – she saw an opportunity to organize a PHA special event in conjunction with a popular annual event her town organizes - the “Country Happenings Festival.” Out of this concept grew a July 2012 PHA fun walk which helped educate Vicky’s town about the signs and symptoms of PH. The Country Happenings PHun Walk drew nearly 70 participants and raised over $2,000 for research and services through registrations, donations, and a popular raffle. Walkers began their trek at the Marion Springs Firehouse at the center of town, and ended their awareness-raising walk at a local church, where they enjoyed a luncheon and refreshments. The walk was considered so successful on a local level that the Country Happenings Festival committee has invited Vicky to host the walk in conjunction with the festival each year moving forward.
Here's the extraordinary part. Vicky had no access to internet, could only fax information by driving to her town’s general store, and overcame a number of personal health and community obstacles to make this walk happen. It was quite remarkable to witness!
Vicky Turner is another person in our community who has shown us the meaning of events and the so many ways that people fight back against pulmonary hypertension.
Congratulations and thanks to Vicky and all who make this and so much possible...including the folks who organized another great event, the Ist Annual Central Florida Phun Walk which took place over the Labor Day weekend. Here's some info from PHA's Leslie Mahaney on that event...
This inaugural event was hosted by PH patient, Joy Morgan, who is the leader of the Central Florida PH Support Group and her niece, Danica Sun, who interned with PHA's Volunteer Services this past spring. Joy did an incredible job with fundraising and marketing – she had coverage in her local newspaper and had a live broadcast at her event by WSIR radio. We have not figured out final numbers since the event was this past weekend and she collected a lot of money on race day. The group was raising money for research and patient and family serving programs.
The photographer who compiled this video is Dr. Ernesto Uy, Joy's physician.
Tuesday, September 4, 2012
Living life: Savanha, Katie Grace and Kathy...
For her 14th birthday party earlier this year (and the previous 2) Savanha Groebner asked friends and family members to make donations to PHA instead of giving her gifts. Savanha’s little sister, Katie Grace, has PH.
This year, Savanha and her friends went around their
town on a scavenger hunt. This is what it said on the cards she handed out:
“At 9 years old I found out my baby sister, Katie Grace, had pulmonary hypertension. We were told she had 1 year to live. I met other families facing the same challenges. I now stand with them in HOPE for a CURE. My goal is to be a cardiologist and a PH specialist. I do all I can to help. This is my 3rd birthday I have asked my family and friends to donate to PHA in lieu of a gift.”
Yes, Savanha and Katie Grace are an special - and so is their mom. A friend sent me Kathy Groebner's video, titled What About Me? today and that's what got me thinking about this inspiring family.
With all the things our community goes through, people keep creating and building. If that's not life, I don't know what is.
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