Monday, December 31, 2012

As we begin 2013…an important new direction for PHA

Carl Hicks, Bette Perez, Lisa Beth Gansberg, Gina Parziale, Rino Aldrighetti
Almost exactly one year ago, I began an important new conversation with PHA’s Board of Trustees.

At that time, PHA was able to look back on significant and almost uninterrupted growth during the past dozen years.  Looking forward, however, we anticipated that, without changes, this growth could be at risk.
Let me start by explaining why growth is important in our disease state and the risks we face and then I will talk about our plans for the future.

PHA has always known that it is no less complex or expensive to solve the problems of a disease state like PH, with our 20,000 to 30,000 diagnosed patients in the U.S., than it is to solve the problems of a disease like diabetes (24,000,000 diagnosed in the U.S.) or arthritis (73,000,000).  In the face of that reality, we have built a system that has allowed us the funding to do what we need to do.  That system has been built upon our members and friends who give very generously, special events organized at the grass roots level, external givers like foundations and industry.
Industry giving has been significant and there is a reason for their strong support.  PH – which had no treatments before 1996 and only one (Flolan) until 2001 – has as many or more treatments today than all but two of the 7,000 rare diseases identified in the U.S. by the U.S. government.  Here is that list as of June 2011:
Leukemia…………….25
HIV/AIDS…………….24
PH/PAH………………..9
Hemophilia……….….9
Growth failure….….8


Having said that, industry giving functions parallel to their business cycle in a disease.  As their products mature and move toward generic availability, the good news is that pricing will go down…we are already seeing that with Revatio.  However, the other side of the coin is that we anticipate this segment of PHA’s funding will begin to recede. 
Even if industry funding was to hold steady or increase – and, with new products in the pipeline, that might well happen – PHA still needs to develop alternate funding.  We have always been driven to do all that needs to be done and never to be limited by the size of our patient population.  As we have grown, we have been asked to – and strive to – do more:

·       to coordinate, train and assist a support group network that will shortly include over 250 groups

·       to organize and provide essential online and face to face medical education for a medical community that is rapidly growing

·       to develop and assist patient and caregiver groups for segments of our community with specific needs and interests

·       to increase support for adult and pediatric PH research within our five research programs

·       to support the development of a system of standards that will result in defined and accredited PH Centers of Care to improve the quality of clinical treatment for patients

·       to rapidly expand our early diagnosis campaign, Sometimes It’s PH, toward our goal of reducing the time from onset of symptoms to point of diagnosis over the next five years

·       and so much more…to see, all you have to do is look at PHA’s three primary websites, www.PHassociation.org, www.PHAonlineuniv.org and www.SometimesItsPH.org. 
All this is exciting opportunity to make things better for our community…but it also requires significant resources. 

So, that’s why continuing growth is important and those are the risks we face.  Now let’s talk about how PHA is responding.
At PHA’s board meeting in early 2012, I talked to our board about the same issues I am writing about in this blog and we began a discussion to ensure our sustainability…an eight month process of search and discovery.  Our goal has been to find and build a structure that will keep PHA strong and independent in the coming years to do all the things we must do. Our timetable was to make a decision and establish our new structure for this goal by January 1, 2013.
As I post this blog on the last day of 2012, it was quite a trek but we have met that goal.
In the early months of 2012, board and staff began to investigate and discuss different options.  For various reasons, each was rejected as not being capable of fully meeting our needs.
Then, on July 17, we had a full day meeting with the leadership of the Cystic Fibrosis Foundation. 
Our history went back a long way with CFF.  A year or so after I began work with PHA as its first staff person, board member Jack Stibbs and I had a number of meetings with Bob Dresing, who was one of the founders and who had been CFF’s first CEO.  More recently, our Scientific Research Council had been working closely with Dr. Bruce Marshall, their VP of Clinical Affairs about their development of Centers of Excellence.
At our July meeting, we brought in 5 board members with business and medical background and 5 staff.  We went through a number of issues with their long-time CEO Bob Beall and COO, Rich Mattingly and a number of others. 
During follow-up discussions, it was clear that we had unanimous agreement that their Chapter structure fit both our mission and goals.
 We had a target.  In the end though, it’s always about people.  To maximize our chances of success, we now needed to staff that target…and staff it we did.
On October 1, Carl Hicks became the first member in PHA’s history to move from a board position to a staff position.  Following his resignation from the board, we hired Carl to fill a newly created position, Vice President for Field Operations…certainly not because he was a former board Chair but because – with his military and corporate leadership experience at the highest levels – Carl is clearly the right person for this job.
Our task is to create new funding streams to support the work described above and the work to come.  In the first year, the plan we developed calls for three such Chapter offices to be established and brought to significant profitability within the first 12 months.
Carl has been working rapidly since early October to build this new support element for our structure.  By November he had completed the process of city selection for our first three Chapters.  Once New York, Chicago and San Francisco had been chosen, over 100 resumes were collected and, following many phone screenings among the candidate pool, he began to travel to each of the cities.  In New York, he and Joanne Sperando Schmidt – a support group leader, event organizer and former board member – completed nine first round interviews in a day.  He did eight interviews the next day in Chicago with Liz Rossi – who had organized some of PHA’s earliest large events.  He repeated the process in the San Francisco area with participation by PHA board member Rita Orth.
By late November, Carl and I began second round interviews at the PHA office.  In early December, we had completed hiring for PHA’s first three Chapter Executive Directors:
·       New York: Gina Parziale has well over a decade of rapidly increasing responsibility among New York area non-profits, serving as the District Director of the Muscular Dystrophy Association and the Division Vice President of the American Liver Foundation (New York/New Jersey).

·       Chicago: Lisa Beth Gansberg has been developing fundraising events for over a decade and a half.  Her work has benefited organizations such as the Chicago Chapter of the Arthritis Foundation, the National Kidney Foundation of Illinois, the National Kidney Foundation of Illinois and the National ORT.

·       San Francisco: Bette Perez has been leading non-profits in the Bay area for over two decades with strong experience in special events and major giving.  These include St. Vincent DePaul Housing and United Way of Sonoma-Mendocino-Lake.  (Bette set a record after being hired, securing the first major gift through the new Chapter structure within an hour of accepting her position!)
On December 18, we began a three and a half day training for our three executive directors at PHA’s office in Silver Spring, Maryland. Besides learning about PH and PHA…
·       we analyzed their needs so that the national office is positioned to provide effective support

·       they connected with each other to form a strong team

·       they developed their budgets

·       funding goals were established

·       advertising was placed (and hiring has begun) for what will soon be three person field offices in each of the cities
We have hit our first two goals.  Our first field offices have been established with strong leadership.  Our national office is positioned to provide necessary support for the field structure’s success.  Now, in the new year, the field offices will begin to raise funds as a key component of the funding strategy that will allow PHA to continue to respond to our community’s needs.  Our third goal is to bring each of the Chapters to positive income flow by August.  Following that milestone, we will continue to expand the field structure annually
So, as we close one year and open another, I present this to you as a window to future opportunity for our community. 
As I wrote above, it is no less expensive to solve the issues of a rare disease than one with millions of patients.  We cannot be limited by our numbers.  We must always find ways to exceed them. If we do not fight for this community, if we do not work to defeat this disease, who will?
We have a plan.  We have a team,  We have a worthy and critical cause.
May 2013 be a year of new breakthroughs and realized opportunity.

Thursday, December 20, 2012

As we close 2012, a request to you…

As we close this year, I can only think back to where PHA started years ago.  How much has changed during the past decade.  How much has improved!

While there is still so much more to be done, in 2012 we truly have made great progress in our fight against pulmonary hypertension. If you haven’t already, I encourage you to read PHA’s 2012 Annual Report (PDF).

The increases in research funding, the expanded patient programming, the launch of our early diagnosis campaign none of these advances would be possible without the support, passion and drive of community members…people like you.

Our fight continues.  It will not be over until we have a cure. If you are able, I ask you to make a tax-deductible donation to PHA’s End of Year Appeal and support our fight against PH in 2013.

In these uncertain times, it’s even more important that we all pitch in. We are a small community, and the actions of each of us resonate and have a great impact on the progress of our mission. Your donation to PHA’s End of Year appeal will help PHA carry out our mission in 2013.    Each year we are called to do more…

·       in 2013, medical leadership will be launching a new program to enhance the quality of treatment for patients in our new and growing field, 

·       our new pediatric research fund – the first of its kind in the world – will be making its initial grants

·       the number of PHA support groups is on track to grow to over 250 early next year, an extraordinary number for a community our size

·       the number of state Medicaid and other insurance issues we face have been and are expected to continue to grow rapidly

·       we have been invited to partner in developing a global clinical trails initiative to help accelerate PH research

·       and, much, much more.

Your help is essential to our ability to meet the growing opportunities to make a difference for those living with PH.  And remember, Actelion Pharmaceuticals has made a generous offer to match the first $25,000 in donations from PHA supporters dollar for dollar.  Please make a tax-deductible donation now.

For information on making gifts of stock, please email Giving@PHAssociation.org.

Thank you so much.  I wish you good holidays...back to blogging in 2013!

Tuesday, December 18, 2012

Conference 2012...a view from China

Patients,family members and medical professionals from 30 nations registered for PHA's Tenth International PH Conference in Orlando in June of 2012. Recently, we received a gift from Huanghuan. She is a leader of the iSeekPH Hope Center in Beijing, China...and a very good filmmaker. Here is her view of Conference 2012. Thank you Huanghuan!
(The video begins after a short commercial.)

Saturday, December 8, 2012

Sometimes those that have lost the most give most back...

Sometimes those who have lost the most give most back...

Those were the words of the Fox 8 news anchor in Winston-Salem, N.C. as he interviewed PHA advocacy leader and Board member Diane Ramirez.

It's true. So many of those in our community take what life has put in their path and grown heroically. The segment where Diane appeared is titled Inspired Living. It usually runs 60 to 90 seconds. Diane's interview runs two and a half minutes. Beneath the video Diane is described as "a woman who didn't give up, so others may not have to either."  The PHA website appears below those words, creating greater awareness of PH.

Congratulations and thank you Diane. You are a model for us all.

View the video


Wednesday, November 28, 2012

Steve Van Wormer's path of pediatric PH...6 years later

The following guest blog was written by Steve Van Wormer on the anniversary of his son's diagnosis with PH. Thank yoiu Steve, Lucas and Marina for all you do and for being models for so many in our community...

My PH Past:

Today marks the six-year anniversary of my son Lucas’ Pulmonary Hypertension diagnosis.  On October 28, 2006 he was only four years old when he underwent an array of cardiac testing and my wife Marina and I first heard the words, “Pulmonary Hypertension.”  As any PH parent, patient or caregiver can attest to, it’s a day one never forgets and a diagnosis that changes everything.  Lucas did have about a year of declining health and energy, but in hindsight, we consider ourselves lucky and blessed that his diagnosis was made earlier than most in our community.  What I remember most about that day, after shedding some tears of course, was making the decision to not curl up in a ball but to become a champion for our only child.

 

My PHA Present:

In January through May of this year, thanks to receiving a Tom Lantos Innovation in Community Service Award, I created a series of five Public Service Videos for PHA, with the hope of building PH Awareness.  These videos seem to be resonating not only within our community, but in the media as well.  They have generated news stories on TV & in print and have become a fixture on YouTube and facebook and at PHA events.  They’ve even played on flat screen TVs inside port-o-potties at PHA’s Woodland Crawfish Festival fundraiser… true story!

 

One of those spots, which can be found here, is a call to action to support the Robyn Barst Pediatric Research Fund, voiced by none other than Lucas himself.  As a parent, I couldn’t be prouder of his contribution to PHA.  As a member of PHA’s Board of Trustees, I couldn’t be more thankful to former board chair, Carl Hicks, who was instrumental in taking the Barst fund over its $1,000,000 goal at a recent fundraiser, triggering PHA’s first ever pediatric specific research initiative.   

 

Earlier this month, to coincide with PH Awareness Month, my creative partners and I were asked to translate some of these PSA spots into Chinese and Spanish to reach patients and medical professionals across the globe in China, Spain, Mexico and South America.  I’m so thankful that, six years after Lucas’ diagnosis, PH Awareness continues to spread across the world.

 

My PHA Future:

I’m very happy to announce another PH Project that launched a few days ago on Thanksgiving: a PHA Podcast, dedicated to raising PH Awareness.   “Empowered by Hope – The PHA Podcast” will bring dynamic stories and journeys from PH patients, caregivers and medical professionals in a series of impactful, insightful and, most importantly, hopeful conversations with members of the Pulmonary Hypertension Community.  Three episodes were released last week.  They are a series of conversations with our “Kitchen Table” Co-Founders Pat & Jerry Paton, Judy and Ed Simpson, and Dorothy Olson.  I’m sure you will enjoy listening and learning all about how our organization was formed.  A facebook page was also created (search: Empowered by Hope: The Pulmonary Hypertension Association Podcast).  I hope you can take a moment to “like” it and join in on the conversation.  I’m spending today’s six-year anniversary of Lucas’ PH diagnosis at UCLA with Lucas’ PH doctor (Dr. Juan Alejos), recording a new episode, with many more to follow.

 

In one of the podcasts, which you can subscribe to and download here, PHA Co-Founder, Judy Simpson told me what it means to be a PH Caregiver.  She said, “You do things you never thought you could do.”   Truer words have never been spoken. 

 

So many things have happened on our PHA journey over the past six years… so many things I never thought I could do. 

 

Did I ever think I would travel to Washington D.C. to visit Congressional and Senate offices to solicit support for our PH Healthcare Bill?  No.

 

Did I ever believe I would serve on a planning committee for an international Conference for 1500 patients, caregivers and medical professionals?  Certainly not.

 

Did I ever suppose I would create videos and podcasts that would be shown across the globe from Burbank to Barcelona to Beijing?   Never.

 

But I did.  And I do.  And I will continue.  In honor of my son, Lucas.  On behalf of pediatric patients like Iain, Katie Grace, Parker and Maddie, who need more research and treatment options sooner than later.  In memory of pediatric patients like Rayni, Taylor, Meaghan and Molly - who may have lost their PH battle, but will never be forgotten.

 

Monday, November 19, 2012

Awareness Month: Voices from the PH Community (#7)...

Last Tuesday, November 13, we had our annual Congressional Luncheon.   It is always held on Capitol Hill and this year was in the Dirsksen Senate Office Building.  I particularly liked that because Senator Dirksen, who was a Republican from Illinois, was one of those large personalities who defined the greatness of American politics for me as I was growing up.

One of my favorite quotes from Senate Minority Leader Dirksen - one that should be well remembered by politicians today - was...
I am a man of fixed and unbending principles, the first of which is to be flexible at all times.
We were pleased to have about 100 Congressional staffers and PHA members attend the event.  Carl Hicks emceed and introduced a number of speakers, including Senator Bob Casey of Pennsylvania (who has championed the Tom Lantos PH Research and Education Act in the Senate) and Dr. Gary Gibbons, the new Director of the National Heart Lung and Blood Institute.  Both spoke knowledgeably about our work and Dr. Gibbons remarked on PHA's long and productive partnership with his Institute.  Dr. John Berger, a pediatric PH specialist at Childrens National Medical Center in Washington, DC, discussed issues related to PH, most notably speaking to the complexity that the FDA has introduced into the field as they dealt with the request for a pediatric indication for sildenafil, an issue PHA's Scientific Leadership Council also recently addressed.

But most of all, we heard Diane Ramirez, who has advocated for a better life for all those living with PH  throughout her home state of North Carolina (and beyond), tell her own moving and powerful story of living with PH.  Thank you Diane and thank you Alex Filipse for filming Diane so that it can be shared below.



After Diane spoke, patients and family members from 12 states headed out to talk to our Senators and their staffs.  Here's a picture of part of the group of 20 who visited Maryland Senators Mikulski and Cardin.


This is number 6 in an Awareness Month series on the Empowered by Hope blog.

You can make a difference, too!

Monday, November 12, 2012

Awareness Month: Voices from the PH Community (#6)...

At the beginning of Awareness Month, I attended the Vision of Hope Gala in Baltimore.  Prominent on the program was a video from Meera Salamah, speaking about her life with PH.

The first time I saw Meera was in 2010 when she appeared in the fashion show at Conference with her smile and her pump.  I guess she was about 14 then.  It was her smile I never forgot...watching her video now it is her wisdom I will always remember.

Many thanks to Meera for allowing PHA to share it with you.





This is number 6 in an Awareness Month series on the Empowered by Hope blog.

You can make a difference, too! 

Wednesday, November 7, 2012

Awareness Month: Voices from the PH Community (#5)...


Here's another guest blog.  The McNiff family inspired PHA staffer Ellen Leoni to write...  

After Britt and Sean’s 4½ year old daughter, Mimi, was diagnosed with PH, they found support through a parents’ PH group on Facebook. Britt says, “Seeing what other people were creating for awareness was sometimes shocking but always validating and inspiring.”  

Not long after, Britt was empowered to fight back by raising awareness and funds for the Robyn Barst Pediatric PH Research and Mentoring Fund by running the Smuttynose Rockfest half marathon in Hampton, New Hampshire. Through their personal fundraising page, Facebook and email, and with passion and dedication, the McNiffs raised more than $12,600 in honor of Mimi and in support of pediatric PH research.

PHA’s strength comes from community members like the McNiff’s who are dedicated to fighting this disease and finding a cure for pulmonary hypertension. Watch this incredible video of the McNiff family as they all prepared for Britt to run the half marathon... 


This is number 5 in an Awareness Month series on the Empowered by Hope blog.

You can make a difference, too

Awareness Month: Voices from the PH Community (#4)…


Here's a guest blog from PHA's webmaster, Diane Greenhalgh, written as we complete week one of Awareness Month...




We are just a week into Awareness Month and so much has happened, so many people are making a difference already!

We kicked off the month on Nov. 1 with PH Online Awareness Day. The PH community worldwide took part by sharing information about pulmonary hypertension, photos, videos, personal stories, blogging, emailing friends and publicizing their special events in November. 

There were a lot of posts that used our zebra theme and messaging from Sometimes it's PH: An Early Diagnosis Campaign. The community has really taken the zebra and run with it.  At the top of this blog, you can see the zebra themed awareness image above that was posted by the Latin American health awareness group Concientizaci√≥n De La Salud.

PH associations around the world also held events in conjunction with PH Online Awareness Day. In the United Kingdom they organized people to wear purple lips and in South Africa to share their letters to God.

PHers in the U.S. have so far garnered 60 proclamations declaring November as Pulmonary Hypertension Awareness Month from state and local governments across the country and the month has three weeks left! Michelle Holden in Florida secured 35 proclamations alone, and Jen Cueva from Texas used her proclamation in a letter to the editor in the Galveston Daily News. Read the letter to the editor

Others are doing so many other things, including tabling at local health centers, posting information at work, wearing purple and zebra stripes, and writing a paper in school.

This past weekend, volunteer organizers held seven events across the country in California, Maryland., Nebraska, New Mexico, New York and Texas. They raised awareness and funds for the cause through fun walks, 5Ks, a gala, a brunch and a six-minute marathon. The Texas group (Zebra PHriends!) was even on Good Morning Texas to promote their event and PH awareness. Watch the video below...

                                    



This is number 4 in an Awareness Month series on the Empowered by Hope blog.

You can make a difference, too!

Friday, November 2, 2012

Awareness Month: Voices from the PH Community (#3)...

Just a few weeks ago, Carl Hicks spent 36 hours in the air for an extended weekend trip to Seoul, Korea.

The new Korean PH association had invited him to help infuse the same spirit of volunteerism that they had seen in PHA into their own new organization.

As an important part of his presentation, Carl had asked Colleen Brunetti, co-founder of PHA's Generation Hope group, to speak on film on what her volunteer involvement means to her.

It is a wonderful statement that was well received in Korea and has value for anyone anywhere interested in fighting back against the disease that has intruded into their lives.  So before PHA places Colleen's video on our website, here it is as an awareness month preview...



This is number 3 in an Awareness Month series on the Empowered by Hope blog.

You can make a difference, too.

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"

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.
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

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

On June 30 I published a blog titled, The meaning of events

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.

Here's the story as I heard it from PHA's Jess McKearin...

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...

This blog is a little late coming but it's a story worth telling...

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.

Tuesday, August 7, 2012

Expressing yourself is the pathway to healing...

Expressing yourself is the pathway to healing.

Those were the words of Lester Friedman, PhD, a humanities professor whose career has been at  schools of medicine.

Yesterday I posted a blog titled, Surfing the Blogs. It was about people in our community who write and the benefits they get and give.  That blog reminded me of an amazing keynote presentation by Dr. Friedman at our 2004 Conference in Minneapolis.

It was one of the first that we filmed and today I asked our staff to put it up on YouTube.  Writing for Your Health speaks of stories as medicine, offering wisdom and statistics you do not want to miss...


Monday, August 6, 2012

Surfing the blogs...

Blog information seems to flow like the waters. This afternoon, PHA's VP for Community Engagement, Mollie Katz, sent a note about a blog that focused on PHA's Research Room at Conference.

Med School Watercooler is a blog from the University of South Alabama's Medical School. Pulmonary Researchers Participate in Pulmonary Hypertension Association's International Conference is a well-told story of how one medical team participated in the Research Room at PHA's International Conference in June and the important work they did.

Reading that first blog got me to exploring...

Next, I found Team Phenomenal Hope's site and their blog about their Conference experience.  These are the great folks from the University of Pittsburgh who unveiled their plans to bike awareness of PH across America in 2014.  Besides their Conference story, Team PHenomenal Hope energized by PHA Conference offers a lot of great pictures.  By the way, I love the theme of their website, Team Phenomenal Hope...It's not just about the bike. It's not even about the race. It's bigger than that...

We look forward to working with Team Phenomenal Hope to make this a national PH awareness event when they Race Across America in two years.

A little bit of searching brought out a lot more discovery.

Sometimes, in our community, blog information flows from the sharing of life experiences.  That can happen with groups like Generation Hope and their blog for young adults living with PH.

It can also happen with individuals, as I found with blogs from Colleen S. and Colleen B.

Colleen S. lays her goal out in the subhead to her Daily Ponderings...the ramblings of a girl with Pulmonary Hypertension...sharing the ups and downs of this disease and anything else I want to share!

So does Colleen B. in her PH and "The New Normal"...finding a path with Pulmonary Hypertension.  Her profile explains why Colleen B. writes:

My PhotoI am a mom in my early 30s. I was diagnosed with Pulmonary Arterial Hypertension in January of 2008. This life changing disease has forced me to find a new perspective on things, to find a "new normal," and ultimately to decide what that new normal would look like. I don't believe in letting the disease define that for me. Chronicled here is the story of that still on-going journey.
 
Becca A. tells her story through My Life as a Chronically Ill Teen, defining her purpose clearly and powerfully...
This blog is about hope, love, acceptance, and life's ups and downs. Living with a chronic illness isn't easy, but with the written word, maybe we can bring some hope and kindness back into the world.
Sean Wyman's Blog, Sean Wyman--Future D.O...the thoughts and reflections of a graduate student chasing the dream of being a healer shares insights from his experiences, observations and, yes, trials. 

Kim's blog - The Life and Lungs of Kim is self-described as "the chronicle of a woman who was diagnosed 6 years ago with Pulmonary Hypertension..."
And then there's Pam G.'s Blog, Multi-tasking Wife's Life, in which a caregiver celebrates the joy of self-publishing in the blog world.


Blogs are a great way to talk about what you think is important (or just spin the day's events) in a way that you feel comfortable. They are easy to set up, too.  And, help is everywhere.  All you have to do is Google, how to blog.

To learn more about the value of blogging...or diary-keeping...or any other form of self-expression, you may want to watch an interactive workshop in PHA Classroom. Words for Wellbeing

It's based on the fact that medical research actually links creative endeavors, such as expressive writing, to reduced symptoms and improved health. You may want to invest 45 minutes to get ideas, prompts and tips regarding writing for your own health, as well as guidelines and considerations when writing for publications like Pathlight.

The session was presented by Sylvia Earley, volunteer copy editor for Pathlight, Megan Mallory, PHA's Publications Director and Jeannette Morrill, author of “Living with Pulmonary Hypertension: 34 Years and Counting…Healing the Mind and Body Through Faith.”

Also very much on target is a PHA webinar, Creativity and Healing through Blogging, featuring Leigh McGowan and Colleen Schnell and hosted by Megan Mallory.
My goal for this blog was to spotlight the fact that many in our community are finding satisfaction and personal value through writing.  It may be something you want to consider.

Expressing yourself can be the pathway to healing.

Oh...and if you know of any other blogs from the PH community, please feel free to post a note and let me know.  Thanks!